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!
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