Wheelchairs are used by many people with HNPP, so why do I feel shame for wondering if I need one too?...
As I am sure you know, I have Hereditary Neuropathy with Liability to Pressure Palsies (HNPP), a condition which weakens my Mylein Sheath and exposes my nerves to damage.
There is a HUGE misconception in the public and experts that this disability is 'nuisance' and 'not life-limiting'. However recent research and the reactions of HNPP patients to these common comments, has suggested otherwise.
Is HNPP a life-limiting condition?
I can only speak for myself and my own symptoms, but can hand on my heart say that, yes it does limit parts of my life. I cannot walk for long without experiencing pain for days, I cannot hold things for long without paralysis of my end 2 fingers, I cannot play guitar without pain, I cannot do many things. However, having said that, there are still so many things I can do!
No doctor can say what is life limiting and what isn't! For someone who has a life goal of sleeping, not much will be life-limiting to them besides insomnia, however if someone wants to travel the world they can find a million scenarios that would limit them.
- No condition can or should ever be judged in this way, especially when there is such a large lack of research! -
Is HNPP different in everyone?
YES! HNPP is a disease that effects every single person differently. Some will have pain everywhere, some only in their hands, some in their feet and some won't even notice they have it! For example, I have 3 blood related siblings, all of which seem to not display many (if any at all) symptoms of HNPP. However, it is considered a 50/50 chance in all of them that they have it. They have never been tested because they did not have severe symptoms like mine, however it is totally possible they are all living with HNPP and have not even realised!
This is the case with many HNPP suffers! They can be wheelchair dependent, but have siblings or children who are diagnosed with the condition that don't even require basic medication! No one really knows why this happens, but it does.
The fact this happens can cause lots of problems for the HNPP suffers with more severe cases, such as...
1) Being called/implied to be a Liar -People often assume we are lying or exaggerating because others do not have it 'as bad'. 2) Being compared to other family members - "But your brother/sister has it and they are fine", "maybe you just need to do whatever he/she does?"
3) Being misunderstood by even your own family - "If they have it and can walk, why can't you?" "You are just being difficult..." "I have it too, but this doesn't happen to me"
4) Being treated like a 'nuisance' at the doctor - "I have told you before HNPP doesn't affect people this way", "I cannot explain your symptoms", "Are you sure? Because no one else in your family gets that and it is genetic..."
5) Constantly feeling judged or having to explain yourself. - "Why do you have to use splints but they don't?" *whispers to friend* "I think it is for attention"
These are just a few of many many negative ways people react to us!
So now for the main question...
Do I need a wheelchair?
Right now I honestly have no idea. I know I do not need one full time, and hopefully never will need one full time! However, when I am going out on day trips nowadays, I often cannot and do not leave home for a couple of days afterwards. This is due to the pain I experience after walking long distances. If I simply used a wheelchair when I knew I was going far (such as day trips, or on my bad days when I am travelling to Uni), I could prevent needing to take days out to recover from my pain! This is obviously much better than laying in bed for 48 hours recovering, as it means I do not have to miss out on all the parts of life I currently don't get to see.
I am part of a HNPP Support group on facebook and explained to them my situation to see what they thought. I was assuming to get the same reactions from others... along the lines "you can walk so you don't need it" but instead i realised I was not abnormal for feeling this need...
Here is what genuine HNPP suffers said... (Last names have been blurred to protect their identities!)
Mark told me that he began using an electric scooter for the same reasons I was struggling with! He didn't want to be in pain or to fatigued to be able to live a normal life, so he instead invested in a way to carry on! I like how he said "utilize whatever makes life easier and less painful" because that's what is really important here!
Julie also uses a wheelchair to help her, because she wouldn't be able to attend events otherwise! But unfortunately, like in my fears, her friends think she is being ridiculous as they know nothing is wrong with the way she walks! The thing is, she would be in pain if it wasn't for her wheelchair and like Mark said, she is just "utilizing what makes life easier and less painful!"
Sanna also uses an electric wheelchair! She has the same symptoms as I do, and doesn't want them to increase! This is another fear of mine, because nerve damage can always become permanent! I would hate to not take action, miss out on parts of life and then end up with more limited mobility in the future!
Through asking about using wheelchairs, I have found it is actually rather more common in HNPP suffers than I thought and it is something I will definitely be looking into as a way to manage my pain! So please, if I do begin to use one when I am going far or on the way to Uni, and you see it in pictures, do not be judge mental! :) Yes I can walk! Yes I can feel my legs and have movement in them! But I just don't want to end up in even more pain!
I want to keep living my life to the full, and if a change like this can help me support that, I do not see why it is not worth giving it a go! :) And don't worry I won't need it much and doesn't signify I have become any more ill, or I am dying haha! If anything, it will mean I am in less pain, which is obviously a positive :)
And if you have read this because you are suffering from a similar disability, before making decisions like this please consult a suitable medical professional! I am only going by what I have learnt from my own experience and really don't advise simply doing this without speaking to someone first! Doctors will let you know if they have any concerns! In my case they said it was okay to use a chair to prevent pain, so long as it was not for prolonged use (aka I still need to walk when I can!). Using a wheelchair constantly when you can still walk, can and will cause muscle weakness in your legs and may lead you to lose a lot of strength or even your entire walking ability! It is definitely not a light decision but one that medical professionals can really help with!
Thank you for reading this, I hope it answered some questions and maybe helped a few of you!
Lots of Love,
Tasha x