HNPP · Mental Health

Love and dating in the time of HNPP

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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

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

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.

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.”

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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 · Medication · Physical Health

Patient-doctor relations and HNPP

Doctor Patient HNPP hereditary neuropathy

One of the most important parts of your journey with any kind of peripheral neuropathy is to establish good relations with your doctor. Having recently had a bad experience with a locum GP, only reiterates the need for clear communication and real understanding, especially with a condition that seems to relatively unknown.

A strong emotional fit between how a patient ideally seeks to feel and their doctor makes it more likely that the patient follows the doctor’s health advice, according to a study by Stanford psychology Associate Professor Jeanne Tsai and Tamara Sims.

Sims said that by learning how patients want to feel and tailoring treatments accordingly, physicians can enhance their patients’ trust in them. Finding out what matters to a patient in terms of goals and values is important, she noted.

“This may open the lines of communication so that not only do patients listen more, but they open up and disclose more information to their provider,” she said in an interview.

Finding a specialist:

Finding a doctor who has the clinical training to diagnose and treat neuropathy is not an easy task, however. As Russell L. Chin, M.D. Associate Professor of Clinical Neurology at Weill Medical College of Cornell University states, “there is insufficient training even in medical school in the clinical aspects of neuropathy”.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research.

Then there is the fact that there is no one test to diagnose neuropathy and 99 per cent of what the doctor must use is subjective and you have a cocktail for a major patient-doctor problem. So what can you do?

Dr Norman Latov, who specialises in neurology at Weill Cornell Medicine in New York, and author of Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop, states early diagnosis and if possible treatment is critical to preventing severe disability. So where to begin?

  • First understand that peripheral neuropathy is a neuromuscular disease.  You need to find a Board Certified Neuromuscular Neurologist as this increases the odds of finding one who is able to diagnose and treat neuropathy. In this case, I found the name of a hospital and doctor through a similar hereditary neuropathy based organisation (CMT UK) and they were able to give more details.
  • For those in the US, you may want to visit a neuropathy centre and the NSN website has a list of doctors and centres. It is worth reading  LtCol Eugene B Richardson’s experience on finding a doctor, in which he had to try out several before settling on someone more suitable.
  • Ask a nurse at the local hospital or doctor’s office. Ask a support group leader or even ask another patient in a support group. Everyone has different pieces of the jigsaw in regards to information, so it’s worth searching around for it.
  • Avoid centres and doctors who claim to cure all neuropathies and offer over-stated claims. This again is mostly for US-based sufferers, as there are more private consultants that offer this kind of treatment.

Once you have found someone suitable, it is important to establish a rapport and relationship in moving forward. According to John A. Senneff  in Numb Toes And Other Woes, you need to be as specific as possible in describing your symptoms and health concerns, including when the symptoms started, what they feel like, and lifestyle changes you made when they started, anything in particular that triggers them or anything that relieves your symptoms. [1]

What should you do once you have found a doctor?

In terms of working with your doctor, following are some of the suggestions given:

  • Educate yourself – Your doctor should not be your only source of information. For example, pharmacists and patient support groups can provide useful information.
  • Ask questions – If you have not call from a newspaper or magazine you would like to discuss with your doctor, don’t be reluctant to take the material with you to your appointment. If you disagree with what your doctor is prescribing do it in a way not to put him or her on the defensive. You may need to be tactful when asking.
  • Disclose symptoms and medication – For your initial session remember to mention all of your medications including prescription as well as over the counter. Also be prepared to discuss your symptoms in detail.
  • Discuss your medical history in depth – Don’t be afraid to divulge information that might be relevant. Your doctor will be much more effective in dealing with your problem if he or she knows as much about the surrounding circumstances as you do.
  • Be honest – even if it’s uncomfortable with meeting to unhealthy behaviour. It is necessary to tell your doctor the truth.
  • Take notes – if the explanation is complex have your doctor write it down for you.
  • Get a second opinion – if your doctor advises an invasive test or therapy that carries risk.[2]

Room for improvement definitely exists in the patient-doctor relationship. As Tsai and Sims note, physicians should recognise that their patients have “effective ideals” that might influence how they respond to physicians. In looking at how doctors can improve, the authors add:

  • Physicians could evaluate their patients’ ideal affect in light of whether there are more effective health care providers or treatments consistent with those ideals.
  • If none exist, physicians might discuss with patients how their ideal affect might help or hinder specific health care recommendations and treatments.
  • More effective interventions aimed at educating clinicians about the importance of ideal affect in health care should be developed.

No matter how difficult it may seem sometimes, there are physicians out there who understands the value of the doctor patient-partnership for patients with hereditary neuropathy.

  • 1. Page 237-238, “Numb Toes And Other Woes”, Senneff, John A., 2001.
  • 2. Page 236, “Numb Toes And Other Woes”, Senneff, John A., 2001.