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!

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HNPP · Physical Health

HNPP and Sleep Positions

Sleeping positions HNPP

How many times have you woken up in the morning with a numb hand or just in general agony from sleeping in an odd angle? Well, this seems to be a regular occurrence for me and was featured as a recent topic on one of the HNPP forums. Correct positions during sleeping is absolutely vital to stop further neuropathic pain, nerve damage, and that ever-irritating pins and needles sensation.

The compounding effects of neuropathic symptoms and sleep disturbances can leave you in a vicious cycle, so you definitely need to address it head on.

The question asked during the discussion was should you abstain from sleeping in the below position? And the answer seems to be YES.

schlafende-frau-bett-gr-1

Why shouldn’t you sleep on top of your hands or with the arms near your head?

You are likely to experience a tingling arm or hand (more likely even worse) if you sleep on it for a long period. Your body weight will exert pressure on your nerves and disrupt the circulation of blood to your arm. Sleeping on your arm may compress the arteries and restrict the flow of blood with nutrients to your arm tissue. Consequently, your arm will not send signals to your brain or understand signals from your brain.

Extended pressure on the ulnar nerve in your arm interferes with the function of the nerve and makes the hand numb. Sleeping with a bent elbow compresses the ulnar nerve. You will wake up with tingling arms or hands.

And if you have carpal tunnel syndrome, it will definitely make it worse.

Pressure on the median nerve compresses the nerve. Any numbness, tingling, impingement, or pinching in the median nerve will lead to pain in the fingers, hand, and forearm. The first symptom is fingers falling asleep or becoming numb at night. The numbness and pain may extend to the forearm and sometimes to the shoulder.

What should you do about your hands?

Wear a brace. One of the easiest things you can do to make sleeping easier is to wear a wrist brace to bed. This will prevent you from bending and flexing your wrist while you sleep.

Wrist_brace

And stating the obvious, avoid sleeping on your side. Sleeping on your side may be associated with a higher risk of developing numbness, weakness or further pain.

Support your arms while you sleep. It’s important to think about where you normally place your arms while you sleep and whether or not this may be worsening your symptoms. Try to avoid sleeping with either arm underneath you or your pillow, as this may worsen the pain.

sleeping

Propping your arms up on pillows while you sleep may help relieve tension and reduce pain. If you are sleeping on your side, make sure the side which may be worse is on top. Place a pillow in front of you and place the affected hand on the pillow. You may need to experiment with the height of the pillow to find the most comfortable position for you.

Keep your arm straight. Bending your elbow may increase the compression on your nerve, which can make your symptoms worse. As much as possible, try to keep your elbow straight throughout the night.

So what is the best way of sleeping?

Speaking to several other HNPP’ers, it seems the consensus is to sleep on the back. While some say sleeping on the front is also comfortable, it can also cause undue pressure on your back and spine. This is because most of your weight is in the middle of your body, which makes it difficult to maintain a neutral spine position when you’re sleeping.

You’ll also need to turn your head to the side when you sleep on your stomach. That puts your head and spine out of alignment, twisting your neck, potentially causing long-term neck pain.

If you’ve always slept on your stomach, then it might be difficult to change a lifetime habit. If that’s the case, use a thin pillow or no pillow at all. The flatter the pillow, the less angled your head and neck will be. Also put a pillow under your pelvis. This will help keep your back in a more neutral position and take pressure off your spine. In the morning, you will need a good stretch!

With back pain, place a pillow under your knees to help maintain the normal curve of your lower back. You might try a small, rolled towel under the small of your back for additional support. Support your neck with a pillow.

Sleeping_Positions_for_Back_Pain

If you sleep on your side, draw your legs up slightly toward your chest and put a pillow between your legs. Use a full-length body pillow if you prefer.

Whatever your position, due to injuries or preference, the main thing is PADDING and lots of it. Most of this will come in the form of pillows, but spending a little bit of money to buy a memory foam mattress will do you a world of good.

Happy slumbers!