HNPP · Mental Health

HNPP, depression and anxiety

Anxiety depression hereditary neuropathy hnpp

This is one of the more difficult subjects to tackle. It could partly be because some HNPP sufferers worry about coming forward due to the stigma of mental health, or feel they may be overreacting. But rest assured, it is absolutely natural and completely expected.

According to Scott Berman MD, Psychiatrist and neuropathy patient, there is a strong overlap between neuropathy pain, anxiety, and depression. In his book, Coping with Peripheral Neuropathy, Dr Berman says each of the components can raise the risk for having the other two. As much as 30 to 60 per cent of patients with chronic pain develop feelings of depression and anxiety, while pain and depression can co-occur 30 to 50 per cent of the time, and each can cause the other.

As a result, anxiety can cause several issues that may lead to the development of these neuropathic types of symptoms. Just a small sample includes:

  • Hyperventilation – common when you have anxiety, and when you hyperventilate your blood vessels constrict which takes away blood flow from some parts of your body. Without blood flow, these areas start to tingle, burn among others.
  • Nerve firings – anxiety could potentially cause the nerves to fire more, which can also lead to this feeling as though your nerves are always activated and cause “nerve damage-like symptoms” that can be hard to deal with.
  • Over-awareness – When you’re overly aware of your body, you can have trouble moving them leading to issues with gait (walking style) and how your body feels.

So it’s hardly any surprise that it becomes a vicious cycle, as you may have anxieties over fear of relapse or worsening, disability, isolation, stigma or even fear of further pain.

So how do you find ways of coping?

Everyone has different strategies in dealing with anxiety and stress, however, if you feel particularly stuck, these may be of benefit.

  • Speak to your medical practitioner or GP, and share your fears – don’t be alone with them
  • Speak to the groups and networks available. Please find them on the Resources page
  • Speak to friends and family if reasonably possible, they may not necessarily understand, but a listening ear is always useful
  • Mindfulness based stress reduction programs combines aspects of meditation and yoga. Many hospitals and complementary/alternative medicine centres use it
  • Spiritual and faith based help
  • Exercise, massage and yoga
  • Medication treatment
  • Breathe better – make sure you slow your breathing down considerably if you’re hyperventilating. Take as long as 5 seconds to breathe in, hold for 2 seconds, and breathe out for 7. Slowing down your breathing is very important for controlling anxiety.
  • Distract your mind – you need to distract your mind from focusing too heavily on your body, because only by doing that can your body’s movements feel more natural again.

What about depression?

Depression in neuropathy is often confused with the condition. That is, continued problems in function are often attributed to “psychological” or “psychosomatic” issues. Bottom line: all pain is real, and physical symptoms most often have physical causes. The role of the psychiatrist/psychologist/counsellor is to help with the emotional issues that arise from the stress of a medical disease.

Depression and chronic pain share some of the same neurotransmitters – brain chemicals that act as messengers travelling between nerves – as well as some of the same nerve pathways, and depression and pain can interact in a vicious cycle. Depression magnifies pain, changing the brain’s sensitivity to painful stimuli and reducing a person’s coping skills. And the constant stress of experiencing chronic pain can lead to a cascade of other medical problems linked with depression, making it still more difficult to break the cycle.

Read: Side effects of medication for HNPP

There are also known side effects from some medication for HNPP that is said to cause severe depression. In the report Depression and Attempted Suicide under Pregabalin Therapy from 2014, the authors say one of the rare side effects include suicidal thoughts. Pregabalin is a compound originally developed for treating epilepsy. Meanwhile, it has shown positive effects on neuropathic pain as well as on general anxiety disorder and is therefore largely prescribed by neurologists, psychiatrists and, of course, general practitioners.

An FDA warning concerning self-harm in patients taking antiepileptic drugs was released in 2008, yet a relevant risk for pregabalin is postulated to be less than 1 per cent. In the above report, a 20-year-old man was admitted to a psychiatric ward for severe depression and suicidal thoughts, although it was his first episode of a psychiatric disorder.

The authors add: “After the patient retrospectively clearly correlated the start of pregabalin therapy with the onset of his depressive symptoms during exploration on our ward, we immediately discontinued the drug. Consequently, he reported a rapid decline in depressive symptoms, his mood remained stable, and he was discharged.

“Taking into account that certain antiepileptic drugs have been shown to be protective for patients with bipolar disorder concerning suicidality, but hazardous for patients with monopolar depression, for example, there may be critical patient variables also for pregabalin which remain to be elucidated.”

So you may want to talk to your medical practitioner about changing your medications if this seems to be the case.

Some common signs of depression include:

How you might feel How you might behave
  • down, upset or tearful
  • restless, agitated or irritable
  • guilty, worthless and down on yourself
  • empty and numb
  • isolated and unable to relate to other people
  • finding no pleasure in life or things you usually enjoy
  • a sense of unreality
  • no self-confidence or self-esteem
  • hopeless and despairing
  • suicidal
  • avoiding social events and activities you usually enjoy
  • self-harming or suicidal behaviour
  • finding it difficult to speak or think clearly
  • losing interest in sex
  • difficulty in remembering or concentrating on things
  • using more tobacco, alcohol or other drugs than usual
  • difficulty sleeping, or sleeping too much
  • feeling tired all the time
  • no appetite and losing weight, or eating too much and gaining weight
  • physical aches and pains with no obvious physical cause
  • moving very slowly, or being restless and agitated

Source: Mind.org.uk

When it comes to neuropathy sleep changes, low energy, poor concentration is common. As the 2014 anxiety and depression study says: “Clinical observations and epidemiological studies show frequent association of chronic pain with psychiatric disorders, including a high prevalence of major depression among pain clinic patients and a high lifetime comorbidity between neuropathic pain and mood disorders.” Hence depression can be a major excess when dealing with chronic neuropathic pain and fatigue.

How to proactively deal with depression

Following are several steps to help proactively prevent or manage both the chronic pain and associated depression that may develop:

  • Early diagnosis of depression associated with pain – many physicians are not necessarily trained to assess for depression during the course of treating pain. Talking to a physician about symptoms of depression, while still in the acute pain phase of pain, can alert a physician to the need to consider treatment of both conditions. An informed physician can suggest a treatment plan early on that treats the patient’s depression as well as their physical pain, giving the patient the best chance at a positive outcome.
  • Communicate about depression – depression and an emotional reaction to chronic pain are to be expected; they are understandable. Many patients do not speak to their physicians about their depression because they believe that once the initial pain problem is resolved, the depression, anxiety, and stress they are feeling will go away. However, secondary losses from a chronic pain problem, such as the loss of the ability to do favourite activities, disrupted family relationships, financial stress, or the loss of a job, can continue to contribute to feelings of hopelessness and depression even beyond the resolution of the pain problem. Talking to a physician about feelings of depression will keep the physician better informed and better able to provide appropriate care. Depression can affect the frequency and intensity of pain symptoms, and the healing rate. Getting simultaneous back pain and depression treatment will give the patient a better chance of a full recovery.
  • Seek multi-disciplinary care for pain and depression – a multi-disciplinary course of treatment that involves involving both a physician and a mental health professional can often provide the best outcomes. With a team approach, both the pain problem and the depression are monitored simultaneously, and both doctors can communicate about how each area affects the other. It’s important for physicians to understand that changes in the physical symptoms of pain can also be related to changes in a patient’s mental state. In addition, it’s important to note that some common treatments for pain (e.g. opioid pain medication, activity restriction, bed rest), can actually make depression worse. This worsening depression can then affect the physical presentation of the pain. If both physical and mental well-being are being monitored closely by medical experts, treatment and medication recommendations, including antidepressants, can be made that take both the physical pain and the emotional health of the patient into account.

Depression and anxiety can be painful when you’re already dealing with a whole host of other symptoms. And it can spiral the more you feel the effects of HNPP. So it’s important to notice any changes and try to get help as soon as possible.

It can be difficult to pick up the phone, but reach out to somebody and let them know how you are feeling.

  • Samaritans (116 123) operates a 24-hour service available every day of the year. If you prefer to write down how you’re feeling, or if you’re worried about being overheard on the phone, you can email Samaritans at jo@samaritans.org.
  • Depression Alliance is a charity for people with depression. It doesn’t have a helpline, but offers a wide range of useful resources and links to other relevant information.
  • The National Suicide Prevention Lifeline is a 24-hour, toll-free, confidential suicide prevention hotline available to anyone in suicidal crisis or emotional distress. A 24-hour an Online Chat in partnership with Contact USA is also available.
  • Crisis Text Line is the only 24/7, nationwide crisis-intervention text-message hotline.
  • Samaritans is a registered charity aimed at providing emotional support to anyone in distress or at risk of suicide throughout the United States.

Read: How to cope with grief and loss with HNPP?

 

HNPP · Mental Health

Love and dating in the time of HNPP

relationships dating love hnpp hereditary neuropathy

Having HNPP thankfully isn’t the end of the world, but it does make things rather difficult when it comes to relationships. This may not apply to you if like many of the individuals on the HNPP Facebook groups, are already happily or regularly married or in a relationship of any kind. But for those who are trying to balance both worlds, many become apprehensive of making another commitment, when all you’re trying to do is look after yourself. So how do you manage?

Relationships are always work. Add significant stress to the situation and they’re extra work. And HNPP falls under the “stress” umbrella, which tends to add complications to every stage of a relationship, just as it gets in the way of everything else.

Dr. Morwenna Opie, a Clinical Psychologist who works at the Nightingale Hospital in London, UK, says that “healthy” relationships are important. Dr. Opie, who has been diagnosed with POTS secondary to Sjögren’s Syndrome, states: “Healthy, supportive, and fun relationships can be our greatest asset in shaping a happy and fulfilling life, and this is especially the case when opportunities for physical activity are more limited.”

However, she adds a warning to this statement: “maintaining unhealthy relationships can be more toxic to our health as those chocolate binges or caffeine or whatever else we might have resolved to do away with this month. The evidence continues to accrue demonstrating that social stressors and anxiety takes their toll on our immunological functioning, and all aspects of our physiology, with the potential to cause a vicious cycle of deteriorating physical and mental health – and relationships.”

The most important relationships she says are friendships which require constant maintenance just like any other kind of connections, which is the first step ahead of dating. Think of it as the steps to rehabilitation. Unlike trying to stay sober, your priority is first to yourself and maintaining the connections you already have. Hence, just like in Alcoholics Anonymous, it is recommended that people who are still within the first year of their recovery should avoid beginning romantic relationships.

The first few months of recovery are often described as an emotional rollercoaster because there is so much going on. The last thing that an individual will want to do will be to add the stress of a new relationship to the mix. It is going to take all your attention to make it through this early part of recovery. It’s also important for you to come to terms with yourself during this time.

As a result, the worry for many trying to date for the first time after a diagnosis is seeing yourself differently, acceptance from the other person, and generally managing the symptoms on a day-to-day basis. Therefore, there are several questions you need to ask before making that leap.

Are you in a position to date?

  • Your symptoms are manageable – it may seem obvious but being bedbound or homebound will clearly present its own problems. Unfortunately, this alone may take you out of the game since your symptoms may require you to stay at home, sometimes out of commission entirely.
  • Coming to terms with the condition – if you’ve only recently been diagnosed and haven’t yet worked through the five stages of grief, you’re not in a position to start dating. You’re only ready once you’ve learned to accept your illness and begun to feel at ease with yourself.
  • You deserve love like everyone else – if you’re constantly down on yourself and steeped in negative thinking, you’re not ready to date. Books that I can recommend are How to Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard, who was a law professor for 22 years at the University of California, before falling ill and has written several very useful books. As well as You Can Cope with Peripheral Neuropathy by Mims Cushing and Dr. Norman Latov.
  • You have a life outside your condition – if your chronic illness defines you instead of just representing one part of you, don’t think about dating. Even if you can no longer hold a regular job, you must have something going on in your life to attract a potential partner. This is where hobbies are useful.

What to look for in a partner

You’re ready to jump into the crazy world of dating, so now what? Well, before filling up your calendar with potential male or female suitors, you should have a clear idea of the type of qualities to look for in a mate. Best to look for a partner and not a caregiver:

Your date should be:

  • Accepting – they understand your limitations and doesn’t try to convince you otherwise.
  • Adaptable – they try to find activities both of you can enjoy and doesn’t get upset when you’re forced to cancel at the last minute.
  • Dependable – they are there for you when your illness becomes too much to handle on your own.
  • Humorous – they try to make you laugh during tough times (and good times!)
  • Respectful – they treat you well and admire your courage without “babying” you.
  • Supportive – they ask questions about your illness and strive to learn more about it.
  • Responsible – they are careful with money especially when factoring in costs to treat your illness.

When should you reveal your condition?

Dr. Gail Saltz, M.D., a renowned psychoanalyst, columnist, bestselling author, says: “In the dating world, it’s really about when you choose to discuss the topic of illness. It’s important to be thoughtful about when might be the best time; not disclosing this part of yourself too early or waiting too long.”

One of the biggest challenges about dating when you have a chronic illness is trying to figure out when to tell the person you’re dating about your disease. Some people will tell you that you have to wait until things are more serious between you two before the big reveal about your illness.

Other people will tell you it’s absolutely mandatory to inform them up front, because they should understand that dating you might have some challenges so they can decide if those challenges outweigh the awesome privilege of getting to be with you. There is no exact science to it.

The most important part is to not feel obligated to share such a sensitive and personal part of your life if you’re not ready yet. Let your illness come up naturally (well, as natural as a discussion about a chronic illness can be anyway) and when you feel comfortable.

Ken Robbins, MD, a clinical professor of psychiatry at the University of Wisconsin–Madison says that if you’re especially worried that your health secret “is likely to define you before the person has gotten a chance to know you at all”, then don’t mention it on the first date.

“I don’t talk about my illness on a first date. I may mention why I don’t eat gluten or, “Yeah, I have a bum knee so I can’t run! It sucks!” But I don’t dive into details.”

How I Learned to Date With a Chronic Illness” – Jacqueline Raposo, Cosmopolitan

But there’s one exception and that’s if personal information about you living with a chronic illness is already out on the internet. In this case, you may want to tell your date sooner than later because there’s a good chance they have Googled your name and found out about you.

How should you reveal it?

Unfortunately, there’s no easy way to tell your date about your chronic illness. Here are some tips to revealing information:

  • Practice what you’re going to say – rehearse your speech with a trusted friend or visit a therapist to talk it through, suggests Dr. Robbins. He adds: “Its good to have somebody as a sounding board in a situation like this,” he says. “How you handle this is not something your partner is likely to forget.”
  • Be casual but confident – creating a conversation bridge or segue will be useful such as, “I feel like were heading in a great direction, so I wanted to tell you something.” Just don’t overdo it: “You don’t want to frame this in a way that ends up making a bigger deal of something you don’t want made into a big deal,” Dr. Robbins says. In other words, make your delivery as drama free as possible.
  • Seeking out relationships online – if you tend to meet potential partners through online networks such as Facebook or Match.com, you shouldn’t hint in your profile that you’re concealing a health secret. However, if you’re nervous about rejection or misunderstandings, you might be more comfortable dating someone with similar health issues. Just make sure you’re in the right frame of mind for this, and be prepared for rejections. There are many niche sites that cater to people with specific conditions, and they’re a great way to be up-front with potential mates who are in the same boat:
  •  Know when to give your partner space – Rachel A. Sussman, LCSW, a New York City therapist and relationship expert, says it’s possible that there could be an awkward moment. “[If that happens], say, ‘I can tell by your expression that this is a lot to digest and I completely understand, and Ill give you the time and space to do that,” she says. Then, offer some physical distance but stay in contact.
  • Don’t take rejection personally – “A good person will listen and be kind and not judge, but if [your health secret is] something they cant live with, that doesn’t make them a bad person,” says Sussman. “It just makes them a bad match.” And there can be multiple reasons for a rejection – many of which have nothing to do with you at all. If things were going well up until the time you told them, keep in mind that they rejected your health condition, not you. At the end of the day, it means that they were not the one.

Dating with chronic illness is hard for sure, and there are times when you may feel undateable. Self-care should still be your number-one priority. But there are many things you can offer your dates because you’re much more than your illness.

You could be a great listener, a deep empath, an entertaining storyteller. Sometimes dating is a great way to get yourself out of your head and out of bed, even when the latter seems impossible or undesirable at best.

In the words of Deepak Chopra:

“To value yourself is to love yourself. It is really from here that your love for others comes. If you value yourself a great deal, you actually have something to give to others.”

The fastest way to love and connection is to show the other person who you are right now, in this imperfect moment.

Read: HNPP and the impact of chronic pain on relationships

HNPP · Mental Health

How the internet can help HNPP sufferers

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There are days where you don’t have the time, energy, let alone the funds to help yourself. And as a result reaching out can be a lot of effort. So with that in mind, how do you socialise without leaving the house?

Read: How HNPP can cause isolation

For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role.

According research conducted by the University of Warwick, chronically sick people do not have lower rates of social participation per se. However, the pattern of social participation exhibited by people affected by chronic illness varies from the one exhibited by people not affected.

“If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population.”

Susannah Fox, associate director of digital strategy – Pew Internet and American Life Project

Across all types of chronic illness the pattern of activities in which people affected by chronic illness engage in is very similar, therefore when it comes to social participation, the decisive point is whether one is affected or not by chronic illness and how it may emotionally affect people suffering from HNPP.

One of the most telling things you will find is the absence of resources devoted to help those battling with illnesses to actually make this leap. Instead, there is a wealth of literature pointing to the fact that lack of social interaction is actually a problem.

What technology is out there?

We are fortunate however, to live in an age where social networks make it easy to reach out to others. These are especially helpful when illness and pain prevent us from leaving our homes.

Many different e-social activities, including email and instant messaging, give you an opportunity to stay connected daily. It does not matter whether you are reaching out to friends, family, or online acquaintances; the important thing is that you are connecting and not struggling alone.

So without further ado, here are a few apps, gifts and devices that you can use without leaving your sofa:

  • Vent App – currently available on both iOS and Android, it does exactly what its name implies: it lets you vent. And the best part is that your contacts list stays out of the picture – you’re sharing with random users who stumble upon your posts, and your profile can remain as anonymous as you like. The purpose of venting is to air your issues so you can move on and calm down, and this app is an effective way to virtually get something off your chest. And when many social apps require plenty of your friends to be signed up in order to get the best experience, Vent’s a refreshing take on anonymity.
  • ReachOut –  a support network app for patients and caregivers fighting chronic conditions. By connecting with other patients with similar ailments in specific support groups, users are able to find support, gain self-confidence, develop better coping skills and reduce loneliness and depression.
  • Rabbit – Rabbit is about sharing your everyday. Watch your favourite shows with your friends, without being in the same room or even the same city. Collaborate with your coworkers when you’re all on the road. The possibilities are endless. It is one of the most well-rounded stream-sharing services available, partially because it can be used with any browser and partially because you can share all your favourite streaming services including Netflix, Hulu, Crackle and more. Rabbit requires you to have an account and add the people you want to share a stream with as your friends. It works by having one person in control of the stream, which is shared via a proxy browser right on the Rabbit website. This means you’re essentially sharing the view of a full browser with everyone in your party, and you can go anywhere on the web that you like.
  • Spoonie Living – this app is geared for the creative types, and likely be more applicable for the younger generation. It was created as part of a PhD project, to see if the use of illness and dietary related stickers would help individuals creatively express themselves in a slightly different way to general Meme images found on the internet. It is hoped that using stickers will help towards people creatively managing their illnesses on a daily basis.
  • Facebook Groups – this goes without saying. Finding people with the same condition can literally be a lifesaver when you feel that no one seems to understand you, or you have no one to speak to about the condition.
  • Google Voice-to-Text – for those with hand issues, Google’s speech-to-text recognition supports 119 language varieties for users who want to dictate a message to their phone, which Google claims is three times faster than typing. To access the voice typing function, install Gboard for Android or iOS and pick your language by pressing the G, then selecting the settings wheel. For voice search, use the Google app and pick your language in the voice settings menu. Certain phones have this in-built so you can access Google Voice input in your settings. It will save you time and effort when trying to get in contact with people.
  • CatchMyPain – an intelligent pain diary app that helps you keep track of your pain and connect with similar patients. It is one of the most well-known pain apps not only for its helpful features but also for the way in which it builds community. With this pain app, patients can locate their pain on their body; track stress, fatigue, and mood; and connect with their physician, all through the app. CatchMyPain also has a forum feature that connects chronic pain patients to each other.
  • Diseasemaps – this website connects people who are suffering from different conditions to help them find suggestions from others who also suffer; to make their lives better. You can also find people suffering from the same conditions or even symptoms from across the globe or even in your own city.
  • Patient networking sites – people fighting chronic illnesses are less likely than others to have internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released by the Pew Internet and American Life Project and the California HealthCare Foundation. Social networking sites include:

  • Spoonie Squares – Sophie Bull, a fellow ‘spoonie’ decided to knit squares as an alternative to expensive Spoonie boxes. These are just basic little squares of any colour people ask for and she says she’ll ship them to people for free. No cost on postage or material. She’s encouraging people to join so others can help out and pay it forward. It’s a sweet little community attempting to make a difference.

Obviously joining real support groups and taking part in the real world is the best way of not becoming isolated. And while it is important to have a network of people to relate to, there will be times when life requires you to be alone or when you simply want to be alone.

The point is to strike the right balance and not allow isolation to take over your life.  Get out there in the real world or utilise the internet. Reach out to friends, loved ones, and acquaintances, or try and meet some new friends. You should also enjoy your alone time when it is needed.

Read: Can new technology help HNPP sufferers?

HNPP · Mental Health

HNPP and the guilt of depending on someone

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Dedicated to all the wonderful friends and family in the world helping those with HNPP.

Last week was particularly frustrating. After two weeks of eating TV dinners, my friends came over and cooked me my first proper meal in a while. And following the warm, fuzzy feelings of love and kindness, guilt began to set in. So why do we feel guilty about our attempts to cope with HNPP and asking for help? This may not be the first post about guilt, however, it’s an important factor to think about within relationships.

Feeling guilty comes from the notion that you’re doing something bad or wrong when you don’t meet your self expectations or when you don’t meet the expectations of others. But in being sick and in being physically limited by your illness, you’re not doing anything bad or wrong. When it comes to an illness, there is a difference between doing something and being something.

Kathy Charmaz, Professor of Sociology at Sonoma State University in California, analysed the consequences of the loss of self in the 1983 article A Fundamental Form of Suffering in the Chronically Ill. In it she says that because suffering loss of self develops out of daily life, social psychological conditions contribute to that suffering.

She states: “When ill persons attempt to return to the normal world and fail, they usually feel profound disappointment and grief for their lost self-images. As discrediting events recur, the chronically ill begin to see themselves as permanent failures and as burdens to others.”

The powerlessness of  not being to ‘perform’, and therefore becoming dependent on others can be a major source of worry for some who socially identify on being independent. My friends may see me hovering around the kitchen as they cook for a reason.

Read: HNPP and the impact of chronic pain on relationships

Professor Charmaz adds: “Since becoming a burden is rooted in physical dependency and immobilization, ill persons usually recognize that their illnesses have become their major source of social identity […] Becoming a burden affirms and intensifies immobility and stands in symbolic contrast to the way these persons wish to conceive of themselves.”

Becoming ‘a burden’ means that a person no longer fulfils the obligations implicit in past relationships. Even though what constituted ‘fulfilling obligations’ may only be realised when someone is no longer able to do it, guilt and shame about burdening others usually follows. And perhaps the worst part of this sense is the feeling of uselessness to yourself and others even though those roles and obligations may never have explicitly been expressed.

What becomes obvious is that there is a heightened sense of self-concern about the person we see ourselves becoming and about valued self-images from the past which we have lost after being diagnosed with a chronic illness.

“Guilt was something that forced me to overcompensate in every aspect of my life. I was overindulging and swimming in my own guilty conscience. I thought I had a right to feel guilty because I wasn’t able to participate in physical activities with my children or because I was no longer cooking meals from scratch or that our home wasn’t impeccably clean. I spent so much time overreacting that I didn’t see the bigger picture, where my children didn’t care about any of these things – at least not in the way I did.”

 Lana Barhum – Rheumatoid Connect

In the study, Professor Charmaz alludes to the fact that as a result of negatively comparing our current level of functioning to past levels and previous personal performance standards, individuals “suffer tremendous amounts of self-blame and guilt”.

Consequently, she goes on to add: “they may devote much energy to apologizing to others for their felt inadequacies. Indeed, they may apologize for their very existences because they too share the assumption that in order to be fully human, one must be able to function fully.” This may in turn result in those suffering from chronic illnesses to try and overcompensate.

How does this manifest?

If you do not have a form of chronic illness, you may be perplexed right now. There are many different sources of this guilt. These may include:

  • Physical burden – chronic pain comes in a variety of forms, but in the end it can be debilitating. Those of us who need the help of caretakers can feel as if we are putting our family and friends out and draining their energy.
  • Financial burden – whether you are a young person and have parents that pay for all or some of your medical expenses, or you have a spouse and/or a family, the cost of having a chronic illness can be enormous. Many of us seek alternative therapies to help us heal, which are often not covered by insurance. This is exacerbated if the person with chronic illness is unable to work to cover these costs. Professor Charmaz adds: “When fortunate enough to work, ill persons frequently feel they have to restrict all other activities in order to manage their jobs. But when forced to leave work, they usually just live marginally and leave their prior social worlds entirely. Under these conditions, they suffer a loss of friends and often drastically alter their lifestyles.” This adds to the sense of guilt of not partaking in activities.
  • Cancelling plans – those of us on the chronic illness end feel bad for letting our family or friends down, disrupting the plans, and not being able to socialise and catch-up. Often the pain or fatigue associated with chronic illness is not noticeable and therefore the recipients do not understand or believe it.
  • Unable to go to work – this can be particularly difficult as there are feelings of guilt over not being able to turn up, fear of possible reprisals, as well as self-reproach of letting your boss or colleagues down.

How to stave off feelings of guilt

  • Learning to let go – accepting your circumstances is vital to letting go of guilt. Guilt makes being ill much more difficult and causes emotional stress that is damaging to our bodies and spirits. When you are feeling stronger, you can take on the world without guilt or pity and with motivation but in the meantime, give yourself the same kindness and sympathy you would give to others. Being ill is not an identity – the only one who gets to define who you really are, with all your baggage, flaws and perfect imperfections, is you.
  • Focus on getting better – during flare-ups, your responsibilities may feel like mountains to climb. However, illnesses are here for the long haul and while you may feel good for a day, or week or even a month, it only takes one flare to send you back to bed or having to miss work. In this way, focusing on getting well takes your concentration off the guilt. Overcompensating can end up setting you back.
  • Talk to your friends and family – if you feel embarrassed, take them aside and tell them why you’re feeling guilty. Unloading your thoughts and feelings can be so freeing, and it may help you and your friends understand the grief that can be associated with the loss of self. If you have to cancel on anyone, feel free to them exactly why.
  • Keep a gratitude journal – you can write in this daily or however often you feel like. It can be a recount of your day, your list health or life goals, and more. Seeing the great things, small or big in your life, reminds you of the abundance in your life despite a chronic illness.
  • Avoid monitoring everyone else – I would actually recommend not to look at other people’s social media accounts too much because it can exacerbate feelings of guilt for not being able to perform or take part in the same things. It can also make you feel lousy when you’re trying to avoid thinking about your ‘past’ self.
  • Contribute in a way that works for you – you may not be able to go clubbing or traipsing around art galleries, you can still offer advice and support, share laughs, and enjoy activities that work for you. Maybe you can’t work full time and feel guilty that you aren’t helping your spouse. Yet, if you are the one cooking healthy meals, doing housework, driving the kids and helping with homework, those are some vital ways to support a family.

When any of the above scenarios are in play, guilt is often self-inflicted, which is hard enough. But when family or friends add to the guilt, it makes those feelings come alive and place a much heavier burden on the chronically-ill person. For our own health it’s important to thwart these feelings and thoughts. And when in doubt, be open and honest with your friends and family and let them know how you feel.

Read: How to cope with grief and loss with HNPP?

HNPP · Mental Health · Physical Health

HNPP and chronic pain flare-ups

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Like lightning, chronic pain can strike you down at any point during the day let alone the week. When you are so sick and unable to think clearly, it is easy to be ruminating in a downward spiral and become stuck in that hopeless state of mind, making your pain worse than it already is. Therefore it is essential to keep a strategy in place to manage the pain.

So what is a ‘flare-up’?

The London Pain Clinic describes chronic pain as a pain that persists for an unusually long period of time, which goes beyond the expected time of healing. It can lead to a series of long-term consequences such as loss of physical activity and sleep, a sense of uncertainty and insecurity about the future and feelings of despair and helplessness.

Pain flare-ups typically refer to those times when the chronic pain is more intense than usual. Flare-ups are often triggered by overdoing things, although the effects might not be felt until later, moving or sleeping awkwardly, or cold weather. From a statistical viewpoint, if pain is being measured on a 0 to 10 pain intensity scale, with the zero level implying no pain, a flare-up will mean episodes in which the pain is at level 7 or higher.

It can last from a few seconds to several hours, appearing in various guises such as muscle spasms, migraines, cramps, sharp and jabbing sensations and the like.

Brittani Daniels started up pamper company called Spoonie Essential Box after being hospitalised with the chronic illnesses, Crohn’s Diseases, Lupus, as well as colon cancer. More information about boxes below.

So what’s the plan?

Obviously, the old adage “prevention is better than cure” is an important notion when seeking to manage chronic pain flare-ups. First of all, it’s important to analyse the pattern in which the flare-up occurs and then develop a plan around it. Make a list of steps you will take the moment you recognise a flare-up. Keep the plan handy and resort to it immediately when you feel a flare-up rising.

  • Positive environment – keep affirming to yourself your will power to sail through the painful episode. Research shows that individuals who retain their self-confidence and positive attitude are able to handle the flare-up episodes much better. Think about what has made you feel better in the past and try utilise this during this time.
  • Alternative medicines – consult your healthcare provider beforehand and make note of any changes required to your medications during the flare-ups. Generally, short-term changes to the medicines are required in case of intense chronic pain flare-ups.
  • Monitor your breathing – tensed muscles and a quickened and shallow breathing immediately precede pain flare-ups. To help control the aggravation of a flare-up, it is important that you concentrate hard on the pace of your breathing and learn to take a deep breath.
  • Create a ‘spoonie box’ – consider keeping a stock of bottled water and nutrition bars near your bed. If you don’t eat anything, your blood sugar will drop and your muscles will become dehydrated, which causes the body to ache and will likely increase your pain. If your pain is already severe, by having easy access to food and water, you’re preventing it from getting worse. While there are many companies that provide pamper spoonie boxes, you can probably prepare one yourself at home. Items to consider include:
    • Snacks – from cereal bars and rice cakes to assorted nuts (obviously not if you’re allergic), having a stash of snacks can help get you through several hours without having to get up and raid the cupboard. This, however, isn’t a meal replacement. If push comes to shove, there are meal replacement drinks if it’s too difficult to heat up some soup. Some great spoonie boxes keep popcorn for those who just want to lie in bed and watch some Netflix. Chocolates are a significant part of my stash.
    • Bottle of water – essential while you’re in pain to keep drinking water and avoid getting dehydrated. If you have a thermos, then some chamomile or herbal tea maybe handy.
    • Additional medication / supplements – you may already have a pill box that helps divide up your medication for the week, but having an additional box for your recovery cache will save you from dealing with opening bottles and popping tablets.
    • Sleep masks and ear plugs – for those wanting a peaceful slumber without the blaring and glaring of the outside world.
    • Affirmations – positive messages during this time can help remind you that this is expected and not to give yourself a hard time for ‘failing to perform’. Even the Serenity Prayer is useful for this situation.
      • “I seek the serenity to accept what I cannot change; the courage to change what I can; and the wisdom to know the difference.”
      • “I know it hurts right now but I have been through this before. I know I can handle it because this will settle in time”.
      • “Stay calm, and relaxed. Tension isn’t going to help. Keep breathing slowly and deeply”.
      • “The pain is quite bad now, but I can get the better of this and stay positive. I must remember what I have done in the past which has helped to distract me for a while”.
    • Slipper socks – if they are loose and padded, these are literally the most comfortable pieces of footwear on earth.
    • Baths – sitting in a bubble bath is not everyone’s cup of tea, but for those who want to treat themselves to a luxury ‘spa’ type of day, then keeping bath bombs in your box can help distract you from what this day is all about.
    • Hot water bottles and cool packs – always useful for nerve or muscular related flare-ups.
    • Books, and DVDs – to pass the time, keep that film you want to watch or that book you want to read for during this time. If you’re in too much pain, revert back to sleep mode.
    • TENS machine – if you have one, these are known to provide quite a lot of help easing pain.
  • Alternative treatments – if it’s possible, getting a massage or some other type of holistic treatment may be beneficial.  You can hire professional services for the same, or request a friend or a family member. A gentle massage of the affected area could help reduce tension and pain – but do ask your medical practitioner in case this may aggravate your pain instead.
  • Stress management – prioritise what you will be able to do depending on the day. It’s a reminder that these things might be possible on a good day. Think about what has made you feel better in the past. As you learn to cope with the flare-ups, you should try and set only realistic pain goals or else you are likely to experience a sense of frustration and failure.. It is important to keep the stress levels under control, if you want to minimise the scope of flare-ups. Stress and anxiety aggravate chronic pain and might worsen the situation further.
  • Don’t ignore the pain – this is a given, and it’s unlikely most people can ignore a flare-up. Immediately begin the treatment of a flare-up as it happens, else it might worsen.
  • Make a diary – it helps to make a diary and make regular notes of your experience with the flare-up. It is worthwhile to note down the activities that preceded the flare-up, the mood-swings, medication taken and any other such information.
  • Don’t stop all activity – there is a high chance your pain will get a little better if you force yourself to get out of bed and shower. Getting out of bed with time, can increase your circulation, decrease headaches, and realign your body that was pushed into a misaligned position for many hours of sleeping in bed. Getting out of bed can distract the mind from focusing on the intensity of the pain. It is actually advisable to continue doing some gentle form of activity that does not cause too much of stress. Try to be purposeful with your activities. If getting out of bed and walking around the house for circulation is a goal to decrease pain, think about where to walk in the house. Even going to the garden, and walking around for several minutes can help lift your mood. If the pain gets worse, then do not forget to rest.
  • Relaxation techniques – if getting out of bed is not a possibility that day, consider downloading relaxation apps. These apps may help lower your stress and anxiety by guiding you through meditation and relaxation when sometimes it’s hard to do yourself.
  • Appointing friends and family to help – if you have the option, call a friend and let them help you in anyway suitable. This may include helping around with certain chores, taking a light walk, or just generally keeping you company. It is totally your prerogative to ask for support.

Unfortunately, learning to manage pain isn’t always a prioritised discussion with healthcare providers. Doctors prescribe more pain medication, blame stress and diet, and your time is done. You are expected to just go home and figure out how to deal with these major life changes.

While medical professionals are only just beginning to understand the impact of chronic pain on daily lives, learning to master the pain yourself will give you a head start.

Resources:

Read: Relaxation Techniques to Help HNPP Sufferers

HNPP · Mental Health

HNPP, belief and the impact of misdiagnosis

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The cause of HNPP remains unknown. Only the fact that it is an inherited condition is recognised. According to many websites, it’s considered “painless” or the symptoms are “mild”, which is obviously not the case for many living with the disorder. It definitely makes it difficult when it comes to being believed let alone getting a correct diagnosis.

“Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does.”

Margo McCaffery, 1968

Living with Hereditary Neuropathy with Liability to Pressure Palsies can be challenging. You may experience pain and fatigue that interferes with daily activity. But yet your family, friends, and even your doctor may not understand your concerns. Also, some people may not think HNPP is a “real” condition and might believe symptoms are imagined.

It’s estimated that every 12.5 out of 100,000 people live with it but may not have been diagnosed. The condition can affect anyone at any age. But it is often misdiagnosed as either its sister disorder, Charcot Marie-tooth syndrome, Bell’s palsy among a huge list of other conditions including mental health issues.

But being wrongly diagnosed is not as uncommon as you think.

An estimated 12 million Americans a year are misdiagnosed with a condition they don’t have. In approximately half of those cases, the misdiagnosis has the potential to result in severe harm.

According to the Scientific American, writer Judy Stone says in cases where a condition is considered “rare”, in one survey, it took patients in the US an average of 7.6 years to be properly diagnosed, after visits to eight physicians. During that process, they received 2-3 misdiagnoses. In the UK, it was 5.6 years for a correct diagnosis.

So what impact does lack of belief have on sufferers?

In the 2008 study The Effects of Failing to Believe Patients’ Experience of Chronic Pain, the authors state: “Pain assessment depends on the patient’s self-report of pain and therefore accurate assessment cannot be achieved unless practitioners believe patients.” Taking a hermeneutic approach, where the methodology of the research is based on human experiences rather than quantitative analysis, patients were approached to record their daily life living with chronic pain.

The results showed that six out of the eight participants felt they were being stigmatised, while the other two, who did not have an issue with being believed both had a long-term physical disability.

“He (GP) was another one who blatantly said to me “I do not believe you are in pain” and he went to walk out the house – he wouldn’t give me pain relief”

“The Effects of Failing to Believe Patients’ Experience of Chronic Pain”, Clarke, K.A et al, 2008

As the authors also report that this could be due to the fact that they may have appeared more credible because they had a physical disability that made the pain appear more visible. The participants said that because they felt they weren’t being believed, it made them feel:

  • Like a burden
  • Alienated
  • Angry
  • Depressed
  • Suicidal
  • Not taken seriously

The report concluded that healthcare professionals “through attitude or actions such as withholding analgesia – demonstrate that they are not accepting patients’ reports of pain.”

It added that while each professional is entitled to their own opinion about the credibility of patients’ accounts but it is a professional responsibility to accept patients’ report and to help patients by adopting a positive and responsive manner.

What can happen with lack of belief?

The even bigger problem that this may pose is the fact that if a patient isn’t believed, it paves the way for doctors to incorrectly diagnosis or even completely ignore that there may be an underlying health concern.

This can be seen in the case of blogger, Nadia Tasher, where her doctors diagnosed her with anxiety, when in actual fact she had the rare chronic autoimmune condition Lupus. It took her 80 visits to a GP in the space of one year just to be diagnosed.

Feel so privileged and grateful to Cosmopolitan for interviewing me and writing an article about my Lupus diagnosis and battle with my GPs. Really hope this raises awareness and prevents people from going through what I did for so long. The story they've written about me is … 'Doctors diagnosed me with anxiety, but I was actually suffering from a chronic illness' If you read this I hope it gives you an insight into what I battle with on a daily basis. My Lupus has been so bad recently I haven't even been able to shower myself. But people don't see what goes on behind closed doors. I'm so lucky to have Dave who cares for me the way he does and gives me the courage to keep fighting. Please share my story and raise awareness. Always always trust your gut instinct. #lupus #spoonie #cosmopolitan #article #mystory #diagnosis #raredisease #raiseawareness Please follow the link > http://www.cosmopolitan.com/uk/reports/a9227995/lupus-chronic-illness-mistaken-for-anxiety-hypochondria/

A post shared by Nadia Tasher (@nadiaamytasher) on

And there is a whole spectrum of conditions where sufferers appear to face issues with being believed and getting the right outcome. From Fibromyalgia, to chronic fatigue, unfortunately HNPP lists even further below this category of rare disorders. As seen in the report above, until medical practitioners get a little more clued about chronic pain, fatigue, illnesses as well as HNPP, the onus may have to fall upon the sufferer to push for answers.

What to ask a doctor if you feel they don’t believe you

Here are some tips to help you navigate doctors when they are sceptical of your pain.

  • Tell your entire relevant story – it’s important that you are able to tell the entire story about your pain. When did it start? What does it feel like? Do any activities make it worse? What makes it better?  If telling the story is difficult for you, write it down. If the doctor interrupts you as you are telling it, ask him or her nicely if you could continue before any questions, because it is important that you let them know everything that is going on with you. At the same time, keep the story succinct – the doctor doesn’t need to hear about unrelated events or conversations.
  • Medical records – if you have records from previous doctors, imaging (both the imaging itself and any reports from the radiologist), tests, or journals you have kept, definitely give them to the doctor to review. Some patients even send their records, journals, and questions ahead of time if the doctor is open to it.
  • Type of doctor – a general practitioner may not know very much about a specific type of pain. Always consider the source of any advice or opinion (medical professional or not).
  • Ask questions – if a doctor tells you he/she believes the pain is in your head, ask why they may think that. Sometimes at this point, the doctor will admit that they just aren’t sure how to help you. Ask for a referral. If they don’t know who to send you to, ask them if they have a colleague who might know. If he or she doesn’t have a colleague that knows, get on the internet and look for one right there with the doctor.
  • Searching for doctors – if you feel a doctor does not have your best interest at heart, then try and look for another one. It’s more than okay to look for a doctor who listens, helps you feel empowered, and treats your pain seriously. They are out there.
  • If all else fails – if you don’t have the option to change doctors, then agree to get a referral for a psychologist – they may actually be able to evaluate your pain correctly and then forward on the paperwork back to the doctor.
  • Believe in yourself – it’s very easy to become disheartened when you feel like no one is listening to you. Hence if needs be, practice what you are going to say, and take a list with you, so that you can effectively communicate with them. Another option is to take someone with you who sees the pain everyday and can explain it even better. Your doctor should be a partner in your health, not someone you fight with or against.

You might not be able to change some things that affect your doctor’s attention span, such as the shorter and shorter visit times that are common. But you can take steps to make sure your concerns are heard in the time you have.

Read: Patient-doctor relations and HNPP

HNPP · Mental Health

Why do HNPP sufferers say ‘I’m fine’?

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It seems to be a common occurrence with those with chronic illnesses to never admit to feeling less than fine. When someone asks, “How are you?” the most common, socially-accepted response is “I’m fine!” For many people, it’s an answer they give without a second thought. It’s such a frequent occurrence that there’s even a T-shirt for it.

Many people have this notion that if you look fine, you are feeling good or having a good health day. Many also don’t realise that even when we say we are fine, we really are not.

Why do we say it if we don’t feel it?

There is a range of reasons why a person with HNPP may not admit to feeling less than well on a given day. From embarrassment and the shame of ‘complaining’, to not having the energy in giving a long explanation. And some days you really are ‘just fine’.

Stigma of illness

In some cases, people with chronic ‘invisible’ illnesses find it difficult to admit that they are no longer 100%. The stigma of feeling ‘abnormal’ can be a driving force in concealing how they really are. Phillip Vannini, author of Body/Embodiment: Symbolic Interaction and the Sociology of the Body explains that when the body fails to function in expected ways, it changes into a “dysappearing” entity, which means a body appears to be ‘dysfunctional’ to ourselves and others.

He writes: “Just as we become excruciatingly aware of our failures when we slip up, sinking into embarrassment and perhaps even shame, so do we experience these discomforts if and when illness and disability move us from a tacit relationship with our bodies to a more conscious and reflective one.

“When we realize that we can no longer count on our bodies to look, behave, or move as they once did, we change the image that we imagine others have of us.”

shame embarrassment HNPP hereditary neuropathy

Norma C. Ware, Associate Professor of Medicine at Harvard, reiterates the notion that those with chronic illnesses try to lead seemingly normal social lives or simply to continue to perform the routine functions of daily living as a result of feeling ‘dysfunctional’. In Suffering and the Social Construction of Illness, published by the Medical Anthropology Quarterly, she argues:  “In casual conversations, [chronic illness sufferers in this case fatigue] deliberately omit any reference to their condition. If asked how they are, they invariably reply brightly, “Fine!”

“For these individuals, dissembling, as difficult and demanding as it is, seems preferable to the risk of being disconfirmed in their experience of their illness.”

She goes on to add that the lack of shared knowledge of the illness and of meaningful terms in which to describe it made it difficult to argue convincingly when speaking about it to others.

The Academy of Pain Medicine reports that more than three-quarters of patients with chronic pain suffer from depression at some point, and a 2011 study linked self-concealment — the tendency to hide negative or distressing personal information from others — with high levels of chronic pain. “Individuals with chronic pain might conceal aspects of their condition for various reasons. For instance, they might perceive pain as a source of stigma or as a burden for close others,” the study authors wrote.

For those who feel like a burden to the people around them, saying “I’m fine” becomes second-nature. Even though we didn’t do anything to cause our condition, we feel like it’s our fault and that we are making the lives of those around us more miserable.

However, it may not be the only reason why we say “I’m fine”.

Taboo of speaking out

According to a study conducted by healthcare provider Benenden Health in conjunction with the charity Beating Bowel Cancer, putting on a brave face and refusing to offload problems on to family and friends were the trends that emerged when the charity examined the everyday problems and worries of 2,000 people.

“Putting on a ‘brave face’ can often be our default mode when we are faced with issues which worry us out of a fear of appearing weak.”

Paul Keenan, Head of Communications from Benenden Health

The figures showed 85 per cent of British people thought acting fine when really they’re not was a common trait. It also showed the average person is found to put on a brave face and bury serious worries around health, financial concerns or general mounting stress – uttering the throwaway phrase ‘I’m fine’ eight times a month when in reality they aren’t.

Results showed six in ten admit to ‘putting on a brave face’ in times of serious worry, while a quarter thought it embarrassing to show any signs of weakness with fears of being judged or labelled being common.

Paul Keenan, Head of Communications from Benenden Health said: “Putting on a ‘brave face’ can often be our default mode when we are faced with issues which worry us out of a fear of appearing weak. But when this impacts our health and wellbeing we really need to address our reluctance as a nation to open up about these concerns and seek appropriate help.

‘’Speaking out an early stage when something is concerning us, particularly if that’s a medical issue, can greatly increase our peace of mind and reduce the risks of the problem worsening. We shouldn’t be afraid to talk about issues that worry us and ask for support to help us through the difficult times.”

More than half of those who participated in the study admitted to regularly masking pain from others and two thirds have kept a troubling health worry from a partner while more than two thirds of people agreed that there is a common tendency to make assumptions about people who are troubled by certain illnesses or ailments.

Whether it is down to keeping a ‘stiff upper lip’ or to not wanting to explain an issue, it depends on the individual.

Staying positive

There is a fine line between staying positive and being in denial. However, there are some instances where saying “I’m fine” is down to forcing yourself into a positive mental attitude. In another publication looking at older people’s attitudes into chronic illnesses, the study’s authors say that in amongst 132 people, a few had made adaptations to deal with their illnesses.

The authors state: “We learned that many older adults with chronic illness make the necessary adjustments (through positive attitude, religion, philosophy about life, willingness to modify their routines, etc.) that permit them to continue to live satisfying daily lives in ways similar to their former selves.”

Most sufferers do not want people to walk on eggshells around them, so the default is to live a somewhat ‘normal’ life without pity. It can also mean because the reality hasn’t changed since the last time you’d seen them, so let’s focus on the positives.

Guilt

Many of us with chronic illnesses entrap ourselves by worrying about making other people feel guilty. They often don’t know much about our health because we withhold information. It’s tiresome to keep saying, “I feel terrible today” or “I’ve got such and such going on”. Some of us would much rather just say, “I’m fine,” and move on instead of having to use the energy to explain.

“This then makes me feel guilty about moaning about it and so I get stuck in a rut, and I’m guessing because people fairly hear me moan, they don’t know the daily struggles of what we have to go through.”

User on Multiple-Sclerosis forum

A multiple sclerosis sufferer wrote on a forum: “Sometimes I do think to myself that [friends] would understand if I were in a wheelchair, which sounds horrific and I really don’t mean it to sound bad but people can’t physically see what is wrong with me and so I guess they struggle with understanding which is fine of course but not one person has turned around to me and asked about it at all, which I would always make a point of doing if it were my friend.

“This then makes me feel guilty about moaning about it and so I get stuck in a rut, and I’m guessing because people fairly hear me moan, they don’t know the daily struggles of what we have to go through.”

This unfortunately, is a fundamental issue with a hidden illness – it makes it difficult to admit that there is something wrong. And as I mentioned in a previous post about the impact of chronic pain on relationships, the problem is our connections with others whether they are friends, family, colleagues or acquaintances, make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.

So what do you really mean when you say “I’m fine”?

  • I don’t feel fine, but because my illness is invisible, I don’t think you’ll believe me
  • I’m struggling but I’ll deal with it in my own way
  • I haven’t been fine for a long time, I just get tired of saying what is really going on
  • It’s not a socially accepted place for me to express how truly terrible I feel
  • Fine is the only answer you’ll accept right now in this polite conversation
  • I’m coping, but I’m holding on by my fingernails
  • I am trying to stay positive – I don’t want folks walking on eggshells around me
  • I am trying not to upset or worry you
  • I am in denial and trying to convince myself I am okay
  • I am too tired to respond
  • ‘I’m fine’ means today my medications are doing a pretty good job at managing my pain
  • When I say ‘I’m fine,’ I really mean I’m in pain
  • I’m not fine but I don’t want to be a burden on you
  • I’m fine because there is too much going on and to sort out to even explain to you
  • Go away, I don’t want to talk to people right now
  • Today is a ‘day better than yesterday.’

There is a lot more where that came from and the truth is you have the choice to say anything that you feel comfortable with, with the people that you trust the most. If someone truly wants to know how you are feeling, they just need to ask: “How are you really doing?”

HNPP · Mental Health · Physical Health

Dealing with genetic testing with HNPP

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Getting genetically tested can be traumatic depending on the outcome, but for many it is a necessity. The uncertainty of not knowing for either yourself or your family can be a harrowing experience, but what comes next may appear to be more difficult. However, a diagnosis for HNPP can help explain how conditions are inherited, in order to help draw up medical management plans and discuss further family planning options.

“There are no right answers, there are simply decisions.”

Asked on the Inspire Forum for Inherited Neuropathy

The psychological effect of a genetic disorder can vary by the nature of the condition and the relationship of a person to the affected individual. Every family is different and it is difficult to predict how people will react to a genetic diagnosis. It’s helpful to think in advance about some of the possible reactions, though, so you can react quickly and minimise distress.

Disclaimer: Please ask your medical practitioner or doctor for more information. This article is based on various research, journals and testimonies.

The following information has been taken from Understanding Genetics: A New England Guide for Patients and Health Professionals:

Patients

A genetic diagnosis can be a great relief to the person suffering from the condition.  It helps HNPP sufferers understand their disorder, especially when the condition is rare and the patient has struggled to find a diagnosis. Patients often spend years living with a condition without knowing its name or cause. Diagnoses usually lead to improved treatment options and access to support services. They can also help other family members make decisions about their own lives.

However, a genetic diagnosis may lead to negative reactions, too. The science of genetics can be confusing, and sufferers are often frustrated until they understand the nature of their condition. Anyone identified with a mutation may consider themselves at fault or interpret their diagnoses as leading to something they cannot fight. A genetic diagnosis can lead to fears about insurance and employment discrimination.

The reaction to a diagnosis varies from individual to individual.

Parents

Understandably, the diagnosis of a genetic condition may put stress on a relationship. Couples with an affected child often face difficult family planning decisions because future children may be at higher risk. Depending on the condition, parents may also be faced with hard choices regarding prenatal testing. It can also put a strain on relationships some times causing a communication breakdown. The magnitude of these decisions and their outcomes has an impact on the individuals involved and on their relationship.

Family 

Unaffected family members should not be forgotten in the case of a genetic disorder. When one family member is diagnosed with a mutation, family members who do not have the mutation often feel guilt that loved ones are affected when they are not.

“When my daughter was in junior high, she told me that if it’s hereditary, it was my responsibility to figure it out. I’ve had various inconclusive genetic tests but am hopeful this next one will pinpoint it. The info won’t affect me in any way, but maybe generations from now, it could be life-changing.”

Asked on the Inspire Forum for Inherited Neuropathy

Siblings of children with special needs sometimes feel neglected because parents need to focus more time and effort on their siblings. Including unaffected family members in the planning of care for individuals with genetic conditions can help them come to grips with their own emotional issues.

Adults who are diagnosed with a genetic condition and are considering having a child will need to consider the risk of having an affected child as well as their ability to care for the child.

Myelinated_neuron

Genetic test results are often complex and may be difficult for patients and their families to understand. In some cases, a genetic test may reveal the risk status of other family members who may not wish to know this information, potentially encroaching upon their autonomy or privacy.

In general, support or advocacy groups and community resources can provide ongoing support to patients and their families with genetic conditions. Support groups provide a forum for sharing experiences about caring for a family member affected with a genetic condition, coping with a new diagnosis, obtaining healthcare or other services, and healing. Members of support groups know first-hand what it means to be faced with a diagnosis and to need accurate, up-to-date information. Staying connected with their community helps individuals fight the feelings of isolation that often surround families living with a genetic condition.

That being said, knowing what to expect during the testing process can help to prepare for what’s to come.

How to prepare for a genetic appointment

There are several things it is helpful to consider and find out before your genetic appointment, these include:

  • Take questions with you – Thinking through your concerns and queries in advance and writing them down to take with you
  • Check where the appointment will be – Genetic centres can be based in clinics across different hospitals so double-check with your hospital
  • Give details of other family member’s genetic diagnosis – If another member of your family has previously been seen in the genetic clinic, please let the clinic know their name and date of birth before your appointment. This will help them link the family information and will save time at your appointment.
  • Gather as much information about your family history – You are likely to be asked for this in your appointment. Clinics usually only ask about your family history as far back as grandparents.
  • If you want someone else tested who isn’t present – If your concern is about a genetic diagnosis affecting another member of the family, the clinic will need to get confirmation of the diagnosis. You may be asked to pass a consent form to your relative before your appointment.
  • Ask for help if you need additional assistance – It is very helpful to let the clinic know in advance.

What does an appointment involve and what happens after?

  • You will be seen by a clinical geneticist or a genetic counsellor, or both, depending on the reason you have been referred.
  •  Your medical and family history will be taken.
  • If needed, you/your child will be examined by the doctor.
  • Where a diagnosis is known, you will be provided with information about the condition including an explanation of how it is inherited and what this may mean for you and other members of your family.
  • Options around genetic testing and family planning will be discussed if appropriate.
  • Support will be offered around decisions that need to be made
  • If genetic testing is available and you wish to go ahead with this, then you may have a blood sample taken.
  • Following your appointment it is likely you will be sent a letter summarising the information discussed.
  • You may only need to attend the clinic once or several appointments may be needed. You will be told at your appointment whether you need to be seen again.
  • If you had a blood sample taken for genetic testing, you should be told when to expect the results and agree a plan for how you will receive these.
  • Some types of results are always given in person in the clinic or by letter.

What next?

  • Genetic counselling – this involves a healthcare professional talking to you about a genetic condition or possible genetic condition affecting you, your child or another member of your family. Another important aspect of genetic counselling is that it provides support with the emotional and family implications of a genetic disorder.
  • Be wary of information you find on the internet – The internet is a powerful tool for diagnosis and support but there is a lot of misinformation out there and some of the things you read might be frightening. Remember, genetic conditions can manifest themselves differently in different people – every one of us is unique.
  • Connect with other people – This is a great way to share advice and support one another.
  • Know your rights – Apart from coping with the emotional and medical issues related to a positive genetic test result, patients are often faced with life-changing decisions, especially when it comes to family planning and thinking about genetic testing for your children. But it’s also important to check where your genetic information is going and how it is being used so ask about it during your appointment.

To find out more information about genetic testing and counselling, here are some organisations that deal with this specifically:

HNPP · Mental Health · Physical Health

Relaxation techniques to help HNPP sufferers

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After a night of tossing and turning, I found that my nerves tend to get worse. The problem is that when your nerves become frayed, lack of sleep can leave you in a vicious loop, so learning to relax is essential for daily life.

When looking to treat neuropathy considering treatments that can help a person learn how to relax so that their quality of life can improve not only physically but emotionally and mentally should be an option.

Mind-body approaches provide a variety of benefits, including a greater sense of control, improved coping skills, decreased pain intensity and distress, changes in the way pain is perceived and understood, and increased sense of well-being and relaxation.

This approach focuses on the interactions among the brain, the rest of the body, the mind, and behaviour. The ways in which emotional, mental, social, spiritual, experiential, and behavioural factors can directly affect health.

Can relaxation help?

According to a study in the International Journal of MS Care, 67 per cent of multiple sclerosis (MS) patients and 43 per cent of peripheral neuropathy (PN) patients reporting the use of at least one form of complementary and alternative medicine in 12 months.

The study itself used 40 sufferers of MS and PN, who took part in a meditation challenge for two months. While meditation does not change the underlying disease, “the effectiveness of mind-body therapies may lie in their ability to facilitate stress reduction, relaxation, and improvement of mood”.

What meditation technique was used?

During each session, the patients practised three forms of meditation in a group setting that was divided into three parts, each lasting 30 minutes. The first part of the session consisted of walking meditation, the second part consisted of moving meditation, and the third part consisted of sitting meditation. Details regarding each technique are provided below.

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  • Walking Meditation

    With the six-part walking meditation technique, patients were instructed to focus their attention on each movement of the foot as they took a step forward. They were told to walk for 10 to 20 paces total, then turn around and walk back the same way. This was repeated for the 30-minute duration of the walking session. The six movements of the foot that they were instructed to concentrate on are as follows:

    1. Lift heel
    2. Lift toe
    3. Move forward
    4. Lower the foot
    5. Heel down
    6. Toe down

    Participants were told to think of the movement first, and then concentrate as they physically took each step.

  • Moving Meditation

    Qigong and tai chi are Chinese mind-body exercises that are considered moving meditation techniques in which awareness and concentration are placed on breathing and specific movements of the body. Study participants performed basic tai chi manoeuvres, including neck rolls in which the head was moved slowly from side to side, ankle rolls, shoulder rolls, hip rotations, knee bends, and alternating pulling and pushing movements with the arms. This was followed by more well-known forms such as “cloud hands,” in which they slowly rotated their body from left to right with sweeping motions of the arms in front of them.Qigong is a more physically rigorous form of moving meditation with shortened and very quick but much simpler movements coupled with deep inhalations and forced exhalations. Focus is placed internally with this type of moving meditation. In contrast, the forms in tai chi are more complex and require outward focus.

    Participants unable to completely perform all movements while standing because of fatigue, instability, or weakness were allowed to sit in a chair and practice with their arms.

  • Sitting Meditation

    Study participants performed samatha sitting meditation, a form of Buddhist concentration meditation in which the mind is focused on one point. Patients sat in a chair or on a cushion on the floor and were told to close their eyes and focus their attention solely on their breathing. They were instructed to breathe normally and observe the movements of the abdomen with each inhalation and exhalation.

Doing meditation at home

Meditation is one of the most widely used forms of complementary therapy, particularly as a palliative for chronic illness, but a lot of people are quite reluctant to practise it for either its possible religious and spiritual connotations. However, it is actually just a way of alleviating stress, hence it can be done by anyone.

Available meditation research is generally of low-to-modest quality, but tends to support this intervention for the reduction of stress and pain, and improving quality of life in a variety of medical conditions.

This meditation exercise is an excellent introduction to meditation techniques.

  • Sit or lie comfortably. You may even want to invest in a meditation chair – but really not necessary.
  • Close your eyes.
  • Make no effort to control the breath; simply breathe naturally.
  • Focus your attention on the breath and on how the body moves with each inhalation and exhalation. Notice the movement of your body as you breathe. Observe your chest, shoulders, rib cage, and belly. Simply focus your attention on your breath without controlling its pace or intensity. If your mind wanders, return your focus back to your breath.

Maintain this meditation practice for two to three minutes to start, and then try it for longer periods.

I found this guided meditation particularly therapeutic. Just make sure you don’t have too many distractions, and prepare your environment, such as switching off lights beforehand. It can be done both lying down or in a sitting position – whatever is more comfortable for you.

If you prefer to meditate by yourself with no distractions, there are entire channels on YouTube dedicated to supposed “nerve regeneration”.

Binaural Beats claims to show increased nerve regeneration in the brain. Using some frequency modulators they say they are able to recreate the frequencies that encourage the treatment by allowing the the nerves to begin to regenerate.

This hasn’t been proven but the music is wonderfully relaxing nonetheless. However, just to warn you, many of the videos are over an hour long and if you don’t have an ad blocker, it can be rather alarming when it gets cut off in between.

What other forms of relaxation are there?

Relaxation and biofeedback are directed toward helping persons with chronic pain become aware of their ability to exert some control over physiologic processes of which they are not normally aware.

  • Biofeedback – The stressors of nerve pain can be eased using biofeedback. Biofeedback is a mind and body relaxation technique that helps neuropathy sufferers learn about their body’s natural internal process to control relaxation. Patches, called electrodes, are placed on different parts of your body to measure your heart rate, blood pressure, or other function. A monitor is used to display the results. With help from a biofeedback therapist, they will describe a situation and guide you through relaxation techniques.
    • EMG (Electromyograph) – The most common biofeedback therapy is the EMG. Because the EMG is used to help correct muscle pain and stiffness it can be the most useful for one suffering with stiff muscles as a result of nerve damage and lack of movement. The device that is used is called an electromyograph which is able to measure the electricity given off by the patient’s muscles.
    • PST (Peripheral Skin Temperature) – A less common form of biofeedback is the PST. The PST is able to measure electrical impulses given off by the flow of a patient’s blood. By doing so, it is able to give information about skin temperature.
    • EDR (Elecroderm Response) – An EDR is considered sweating biofeedback. It is able to monitor electricity produced by a patient’s sweating reflexes. This form is usually used to help with anxiety and depression.
    • Electroencephalogram (EEG) – An EEG monitors the activity of brain waves linked to different mental states such as wakefulness, relaxation, calmness, light sleep and deep sleep. This process is also known as neurofeedback.
    • Galvanic skin response training – Sensors measure the activity of a person’s sweat glands and the amount of perspiration on the skin, indicating the presence of anxiety. This information can be useful in treating emotional disorders such as phobias, anxiety and stuttering.
  • Hypnosis – a state of deep relaxation, which involves selective focusing, receptive concentration, and minimal motor functioning. A National Institutes of Health Technology Panel found strong support for the use of hypnosis for the reduction of pain. Individuals can be taught to use hypnosis themselves (self-hypnosis), and the use of self-hypnosis can provide pain relief for up to several hours at a time.
  • Massage Therapy – Massage therapy is looked at as a complementary therapy that when used in combination with other treatments can be beneficial in reducing nerve pain. One complication of neuropathy is the development of still muscles due to poor circulation or from lack of use. Adding weekly massage therapy sessions, one can improve blood circulation as well as help loosen stiffened muscles thus providing relief to the damaged area. It appears as though research has shown through several  studies that massage therapy has a way of calming the stressed nerve endings and relinquishing the pent up stress found in the nerve endings.

While it may not conclusively help to heal our battle scars, it is always wonderful to try and find new ways of relaxing, freeing our day-to-day constant worries whether for chronic pain and illness, or just life in general. Everyone has a different method of relaxing, it’s just important to acknowledge it as part of our daily routine.

HNPP · Mental Health

How HNPP can cause isolation

HNPP hereditary neuropathy isolation

After reading The Lonely City by Olivia Laing, it brought up the question – are some with hereditary neuropathy and HNPP living in isolation? Of course many live by themselves and do not feel lonely, while others with HNPP are managing fine, but chronic and invisible illnesses can become isolating, whether overtly or more insidiously.

“Pain causes this rupture because it inverts our normal perspective. Instead of reaching out to other people in work or play, we turn inward and self protective.”

David Biro M.D.

It may be as small as the awareness of the decrease of invitations by friends due to our physical limitations.  For some, that awareness grows to a more glaring, in your face, epiphany that friends that were always there before suddenly wish no part in your life -excuses a plenty.

This isolation turns into loneliness. Guy Winch, a clinical psychologist and author of Emotional First Aid, writes in The Huffington Post: “Despite living in an era of unprecedented potential for human connection (e.g., the internet, social media and mobile phones), estimates are that 40 per cent of adults over the age of 65 will experience loneliness.

“Indeed, the 2010 U.S. Census found that 27 per cent of households in America are single-person households, outnumbering all other groups. Of course, not all those who live alone are lonely and not all people who are lonely live alone.”

Why do we isolate ourselves?

David Biro MD, author of Listening to Pain: Finding Words, Compassion, and Relief, also suffered from isolation from depression. He said: “Part of what makes pain “painful” is its privacy and unsharability, the feeling of aloneness. That goes for physical pain as well as psychological pain.”

He adds: “Pain causes this rupture because it inverts our normal perspective. Instead of reaching out to other people in work or play, we turn inward and self protective. This is an instinctive, understandable response. Something is wrong inside of me and so I must attend and focus on the threat and make sure it doesn’t get any worse.”

It’s not the same as dealing with a broken leg, it heals and the person returns to life as usual in most cases. On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, a leading authority on grief and loss.

And when you combine a sufferer who sees only their own pain with an outsider who can’t see it at all, the result is a widening of the normal barrier that exists between people. Hence in order to stop the isolation, you have to break down the wall that stops communication.

Tracy Rydzy, a social worker with chronic pain, said: “Going out for a little while doesn’t always help the loneliness, especially if pain increases when returning.” Though even with careful pain management, we cannot leave our homes as much as we long to.

So how do you break the barrier?

  • Make the pain communicable – figure out ways to make the pain shareable – through words or pictures or whatever other kinds of language can be summoned for the task.
  • Reconnect with friends and family – being a part of social activities, even if its incredibly infrequent, is an essential part of coping. It’s natural to retreat, especially when depressed, but just being around other people can make you feel better and help you cope.
  • Regular connections – use messages, emails, texts to stay in touch every day, whether it is Facebook, WhatsApp, or any other social media.
  • Arrange social activities to fit your needs – invite people to your home, or go somewhere accessible to you. I find when friends come over bringing one dish each can be sociable and helpful at the same time, or watching films with your friends at home. Negotiate your social activities.
  • Ask for help – if you do go out for example to the theatre, ask if they can accommodate you, and you explain your situation. In the past, they have given me seats while waiting outside, or areas to lie down during the interval.
  • Create spaces that fit your needs – making Facebook groups, speaking to others on Twitter, and even create a MeetUp group with similar needs can actually bring new people together. It takes a little productivity and initiative to get out of the funk.
  • Make the most of available aids – in the UK, we’re lucky in terms of certain benefits that can be utilised such as the CEA Card for those who want to take someone to the cinema with them; or a Please Offer Me A Seat badge for those with hidden illnesses on public transport. You can find out more here. It is worth checking what you have available in your own country and states as some provide special Leisure Passes in certain areas.
  • Speak to your medical practitioner – Doctors may be well equipped for the biomedical aspects of care but not for the challenges of understanding the psychological, social, and cultural dimensions of illness and health. They may be able to forward you information about groups, and counselling.

At the end of the day, you need to put your physical health first, so don’t feel guilty for taking some time away. But your mental health comes a close second, so put yourself first either way.