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?”

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