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

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

Things you shouldn’t say to those with HNPP

HNPP hereditary neuropathy illness what not to say

This was the subject of another article for those with multiple-sclerosis and it seems totally relevant for those with HNPP! It can be rather irritating for those with hereditary neuropathy, which can be an invisible illness for many, to hear people’s responses in a bid to stop the uncomfortable silences. But why do people feel edgy and how can we help stop the unwanted questions and replies.

To be fair, this seems to be the case across the spectrum for those with mental and physical health issues. Scope, Britain’s leading disability charity, conducted a survey into attitudes to disability, and apparently 67 per cent of British people feel so awkward around disabled people they either panic or avoid all contact. So what can dispel the awkwardness?

Disability blogger Goldfish explains that ‘awareness’ is not always something to rush towards. It not only creates the idea that a disabled person should be sharing their medical histories at will but creates a relationship between the disabled and the non-disabled that’s unequal, characterised by a damaging, charitable pity. Every ‘favour’ done for someone with HNPP or any kind of disability can be framed as care and take on a special charitable status instead of general eligibility. And that’s where the myth needs to be undone and it seems even more difficult when it’s not obvious.

Nothing less than a cultural and economic shift to full humanity for disabled people will improve attitudes to disability. But in the meantime here’s what not to say.

So what should people avoid saying?

  • You don’t look sick – This is rather an extreme thing to say obviously but with chronic conditions, those around us only see the incremental changes. As chronic illness patient and advocate at the Invisible Disabilities Association, Sherri Connell, says: “The biggest grievance those with chronic conditions have is that their loved ones often do not believe what they are going through is real, because to others they “look good.” Sadly, this makes the person feel as if they are being called a liar or a wimp.” This can actually set HNPP sufferers back, because it’s difficult enough to live with pain let alone trying to make sure you look a suitable way for the world to accept you.
  • You will get better – Not necessarily. Making the assumption that there will be improvements, which will only be short term with progressive conditions, only sets to ease the mind of those asking. And when we don’t improve and our symptoms even worsen, it is us who are frequently thought to be exaggerating. And as difficult as this is to admit, this maybe the new normal. 
  • I have that too! – One of my favourites – unless you really do have the condition, it really isn’t the same. In an attempt to relate to you, people may compare themselves to you. It’s normal for people to think they can relate to something they don’t quite imagine how hard it actually is.
  • I have a friend/cousin/aunt who has the same and they’re doing great – ummm no. Everyone has an opinion and everyone knows someone who is friends with someone that has a certain disease–and that might be true. But not everyone is the same, and the exact same health condition can affect different people in very different ways.
  • It could be worse – Well of course it could be, but every health condition is a serious health condition. People tend to tell you that things could be worse, that you could have a more serious disease, but no one knows what you’re going through. Having a chronic illness means that you have to deal with it for the rest of your life. The only time comparisons might be okay is when we compare where we are now in this illness and our treatment to where we were when we first got sick.
  • You’re cancelling again Believe me, this is only a last resort. Human beings are generally social creatures, hence cancelling is only so we don’t hurt ourselves further. And the issue with HNPP is that our symptoms can change hour-to-hour. The bottom line is – don’t stop making plans, it’s a postponement not a cancellation.
  • If you need anything… – this is said with great intentions. And it is a lovely gesture. The problem is that it is too broad-ranging. We mean it 100 per cent when we say it. So maybe be specific i.e. I’m going to (supermarket), do you need anything?
  • I wish I could stay home all the time – if only we were sitting at home running a Fortune 100 company from the comfort of our beds. But we’re not. Instead when we are home, we hate ourselves for our inability to do what once was the simplest most mundane tasks. We worry about being burdensome. We worry that we’re being lazy. And we compare ourselves to what we were – we don’t want to be home all day. We miss our active lifestyle.
  • God never gives us more than we can handle – Thankfully I live in the UK so I get this less. But it has happened. It is a bit of a ludicrous statement to make given that according to the National Center for Health Statistics there are 16,235 deaths from prescription opioids every year in the US. As patients feel alone and hopeless, suicidal thoughts often overwhelm them. They’d do anything to stop the pain. So please refrain from such statements, but instead think about communicating and reaching out to stop sufferers feeling lonely.
  • Everyone gets tired – That may be true. And most people are not getting enough sleep and rest. But the difference between someone with chronic illness associated fatigue and an otherwise healthy person is the level of fatigue. Unless you literally think to yourself “how much energy will that take?” for every single action you take during the day (including brushing teeth, combing hair, standing to do dishes, putting on makeup, cleaning, driving, etc.) then you experience a completely different kind of tired than people with certain chronic illnesses.
  • You’re just stressed – When we don’t understand something and don’t look physically sick we assume it is mental. It must be cultural or part of human nature based on how often this is said to people with chronic illnesses. Stress, depression, and anxiety can all make symptoms of chronic illnesses worse. But they do not usually cause them.
  • Be positive – It’s great to be positive but it isn’t a cure. Sometimes there’s also a level of denial when you overdo it. Positive thinking that is productive for chronic illness sufferers is not telling someone that thinking positively will help them with their symptoms. Instead, productive positive thinking is finding the positivity that comes with their illness.
  • Have you tried / you should stop – Unless you’re a medical professional or have some actual experience and knowledge with the condition, suggestions are unhelpful. Someone with a chronic illness doesn’t want to defend themselves to you on how they have already tried or don’t trust the efficacy of a certain treatment, especially if your evidence is only anecdotal.
  • All you need is exercise – Exercise is really important and no one is denying that. It helps pretty much any health condition. But it isn’t a cure-all. Those attempting to exercise usually do it as a form of physical therapy as there are so many limitations, especially when certain exercises can worsen the damage.
  • You need to get out more – While a change of scenery is wonderful, chronic fatigue and pain will stop you. That’s it. It also makes them feel guilty for not being able to do something they already want to and are probably trying to do.

The absolute best and most powerful thing you can ever say to someone with a chronic or invisible illness is “I believe you”.

I’m sure you’ve all heard a lot more. Feel free to add your comments!

Follow here if you want to find out more information about the End The Awkward campaign.

HNPP · Mental Health

How to cope with grief and loss with HNPP?

hnpp hereditary neuropathy grief loss bereavement identity

Coming to terms with your new situation i.e. a chronic condition, can be devastating. And for many, getting a diagnosis for HNPP can be that, a life sentence. The idea of having to change your identity can feel like a death, especially if you had tied a lot of your physical life around to your sense of self.

“Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany—a piercing burst of light, illuminating What Really Matters—and more like someone had just firebombed the path forward.”

When Breath Becomes Air – Paul Kalanithi

Not being able to play guitar after 22 years was particularly difficult to me, in which I’ve always referred to myself as a musician, and I’ve always used music as a sanctuary. And for many others it could be their career, the role they have in their family, or the activities that they do.

But are we ‘grieving’?

According to counsellor Andrea M. Risi, being diagnosed with a chronic illness such as HNPP can be analogous to losing a loved one: you! The multitude of losses from a living situation, job to relationships can add up and can negatively affect your mental health.

After a diagnosis it could be days, weeks, months, or even years that you may spend going through the process of grieving. There is no time frame for grief; for some it may be life long. Risi says that’s a normal part of the process.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research. Please ask your specialist for more information.

Elizabeth Kubler-Ross‘ classic stages of dealing with dying, addressed in her notable book On Death And Dying, is useful for looking at dealing with chronic illness. The stages she identifies are denial, anger, bargaining, resignation, and acceptance. If you are still in denial you are unlikely to accept a change in your role.

  • Denial – In this stage, many people simply don’t comply with medical advice or treatments because they’re “not sick,” denying the diagnosis to yourself, but also to your family and friends.
  • Anger – you might blame yourself for ‘causing’ the disease, the doctor who diagnosed you, or even friends and family members who don’t have the illness, feeling that they don’t have an understanding. Anger can be expressed outwardly or kept festering inwardly.
  • Bargaining – This stage is full of all the ‘what-ifs’ and ‘if you do this’. You might try to bargain with your doctor so you don’t have to take medicine or follow through with treatment, though in the long-run it will only end up hurting you. Sometimes you may just have to say Que Sera, Sera (whatever will be, will be).
  • Depression – when it all finally sinks in, you might feel depressed, helpless or generally sad.  Depression can cause you to withdraw from others, have constant low energy or make you feel empty and worthless. That being said depression is treatable in the face of virtually every known physical disease.
  • Acceptance – this is when you have come to terms with your illness, founding coping mechanisms, and have learned more about the prognosis. You’ve learned that while you cannot control having the diagnosis, you can control what you do about it on a regular basis.

One thing that I have found is that these are interchangeable on any given day. It can move from anger to denial in the space of an hour so there is no linear process.

Cheri Register writes about trying to find a ‘happy medium’ while searching for an identity and managing to deal with the effects of chronic illness.

  • You can tough it out with too little help / become overly dependent on your doctor and family
  • You can keep your illness a secret and avoid thinking about it / you can discuss it openly and become self-pitying
  • You can ask for help and risk being a burden / be too independent and isolate yourself
  • You can push yourself to the limit and risk getting sicker / you can do too little and be more of an invalid than necessary
  • You can be angry about your illness and then bitter / you can focus only on counting your blessings and risk being self-delusional

(From The Chronic Illness Experience: Embracing the Imperfect Life)

Hence the key is to find a suitable balance between all of the extremes.

What can you do about it?

Ending this vicious cycle requires a lot of proactive thinking. Debbie Dawson, RN and chronic peripheral neuropathy sufferer, wrote this practical, simple guide that can help you work your way through these questions. Make a list for each of the following situations:

  • Things I can no longer do.” (Examples: Power walking, climbing more than three stairs or steep incline, running a race, driving a car without hand controls, lifting heavy items, standing for any long period, climbing a ladder, holding a job, taking a walking tour, or any major chore around the house).
  • Things I couldn’t do before, but can now.” (Examples: Have time to write, spend more time with family and friends, spend time listening to teenage grandchildren, have enjoyable dinners with friends, understand the challenges faced by the handicapped and disabled).
  • Things I do the same as before.”  (Examples: Sit in the sunroom enjoying sunsets, watch educational TV, write articles, manage investments and home budget, eat, sleep, read, use my computer and use my cell phone, fish off a pier, watch the deer outside my camper, take pictures, enjoy my dog, help other neuropathy patients, support research).
  • Things I can still do, but differently.” (Examples: Go to the mall using an aid, walk the dog with the scooter, write using a thick pen, go on an ocean cruise with the scooter, hunt turkey with help and a blind, go camping with automated equipment, drive – but limit driving to not more than four hours, go up a few stairs by pulling with arms on hand rail, stay active).
  • Things I can do differently, just not ready to yet.” (Examples: Ride the scenic train in Canada, have house modified for handicapped access, purchase a vehicle for the handicapped with hand controls).

(Page 23, “Coping With Peripheral Neuropathy”, Berman, Scott M.D)

Chronic illness sufferers are faced with questions about how they will present themselves and how they will build their life situation. New activities and lifestyle may assist this process and provide a new focus for the energy that was invested in grieving. Developing a meaningful life doesn’t just happen. So here are some ways that might help:

  • Finding new opportunities – It may mean putting time and energy into new hobbies and new relationships or looking for opportunities for personal development or spiritual growth. All of this may be constrained by the limits imposed by illness but you can do this at your own pace, one small step at a time if need be.
  • Thinking about yourself differently – You can change negative self-talk or images of ourselves that are not useful. Attitudes that focus on personal strengths and positive outcomes of the illness experience, rather than limitations, seem to be conducive to moving on with life.
  • Find a network of people – You need to honour your grief journey, nurture yourselves as you grieve your losses and reach out to others to share the burden of loss. This is where having access to a network of people experiencing long-term illness can be so helpful. Feelings can be shared in a supportive understanding context.
  • Talk to specialists – Finding a counsellor can be vital in moving past the grief hurdle. Occupational therapists can help and work with you on adaptive equipment, ways to conserve energy, and other techniques that permit you to do more with your neuropathy.
  • Set small, realistic goals you can meet – your therapists (physio or otherwise) can help you set and keep these aims. If you aim too high, you could fail and probably stop altogether.
  • Knowledge is power – make sure you know your rights, whether they are employment-based or otherwise. Keep up to date with developments in your condition, as well as treat anything else that comes your way (a common cold can feel much worse with HNPP). Don’t trust anything that claims to be 100 per cent workable, and avoid any other dodgy scams.

Everyone is at a different stage, so understanding between HNPP’ers is crucial to get through the process.

Wishing you all health and happiness.