Take my neuropathy seriously please!

This short personal account struck a chord with me because I've often felt exactly the same way as the author and I'm sure many of you have also. It comes from the Neuropathy Association's, Shared Stories and highlights one of neuropathy's most irritating characteristics: you quite often just don't look sick!

Then it becomes a question of being taken seriously and being believed. Most people feel guilty enough not being able to work or take an active part in society through illness but most have some physical signs and proof that all is not well - something the people around them can latch onto and feel sympathy for. In my case, in spite of all the extra things I've had over the years including the HIV, etc, etc...I look outwardly pretty healthy for my age! And yet I'm crippled by this wretched neuropathy that has brought my active life virtually to a halt.

Has that happened to you? Do you feel you always have to convince people that there really is something wrong with you? The trouble is, it's not just your employer, colleagues, social services, or friends and acquaintances who look at you as if you're trying to pull a fast one; it's the medical professionals as well! You very quickly learn to recognise scepticism in the eyes of a new doctor, when you stagger in without obvious injury and looking healthy and begin your tale of pain and misery. You start unconsciously wanting to exaggerate, just to make that person believe you. So when you meet a doctor who greets you with kindness and sympathy, and knows what you're going through, you feel like hugging them there and then! You just don't seem to take comfort in the fact that outwardly, you look fine, which is a plus...right? What's up with all that!

I Just Want My Life Back by K.S.

I was first diagnosed with fibromyalgia and they [my doctors] contributed my foot problems (numbness, pain, tingling, etc.) to the fibromylagia. After a couple of years of getting worse, a neurologist said it was peripheral neuropathy. So, I have constant pain all through body from the fibromyalgia, and my feet prevent me from doing exercises that may give me some relief from fibromyalgia pain.

I feel I always have to tell people about my condition because I do not look sick. My family has seen me living with this for years and know the pain I live with. But at times they still don't really understand how hard it is for me to just walk through the grocery store. I have to explain to people at my children’s school the reasons I cannot volunteer for many things; because to look at me, I look normal, except I struggle to walk normal because of the pain and numbness.

This has totally taken away my life. I can no longer work or even enjoy life anymore. I was denied disability because they do not understand it. At times, it would be easier if I looked as bad as I feel, then people would better understand. But honestly, if I looked as bad as the pain I live with, I would not want to even look into a mirror. So I try to be thankful that it does not destroy my outwardly appearance.

We do not know the cause of this. I have a lot of reactions to any medications used to treat this. I visit a pain clinic once a month to be treated for pain control. I just want my life back. Thank you

- K.S.

http://www.neuropathy.org/site/News2?page=NewsArticle&id=6987&news_iv_ctrl=1181