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Can I Get A Witness! Authentic Voices Tell the Story of Neuropathy

By Dave R.

April 11, 2012

In 1931, the French medical missionary Dr. Albert Schweitzer wrote: "Pain is a more terrible lord of mankind than even death itself."

If you have headaches, or toothaches, most people will be able to identify with you and sympathise. They can't feel your pain at that moment but they've had headaches and toothaches before, so can imagine exactly how you're feeling. Similarly, if you've fallen and broken bones, or cut yourself and are bleeding, most people will be able to empathise with you.

With neuropathy, it's different. Despite the millions of neuropathy sufferers across the world, most people can't hang a mental label on what you're telling them and are therefore immediately distanced from your discomfort. They feel they should be sympathetic and generally do their best but without a reference from their own pain experience, they don't really understand why you're making so much fuss. Extend that scenario over weeks and months and people become disconnected and lose both patience and goodwill. It's not their fault it's human nature; especially when so little is publicly known about the condition.

Authors, scientists, doctors, journalists and bloggers can write about neuropathy until they're blue in the face but there's no substitute for hearing people tell their own stories. This post is therefore given over to some of the men and women with both HIV and Neuropathy who have opened their hearts on forums and in blogs across the Net. There are many, many more!

Here their anonymity is protected but if anyone doubts the veracity of any of the experiences, the original links can be made available. Similarly, if you recognise your own words and wish them removed, I'm sure that can be arranged but I have a feeling that you already understand that sharing your story is a powerful tool in increasing awareness of what having neuropathy actually means.

It's important to state here that although neuropathy is generally a progressive condition, by no means everybody suffers to the same extent as the people above. There are many different causes and many different forms and therefore also many different degrees of experience. Unfortunately, as people live longer with HIV, these sorts of stories will inevitably more frequently emerge in the community.

Finally, the link below will tell you how we really feel when questioned about our condition. Not that we're being dishonest when we just say, 'Okay', or 'Not too bad'; it's just often easier that way. After all, you don't really want to listen to a twenty minute moan do you? Just as long as you understand that neuropathy is really difficult to describe and impossible to ignore. We're not play-acting for sympathy, or trying to morally blackmail you into feeling obliged to help but just a simple acceptance that we're not feeling great today would be perfect, thank you. If you're feeling bad too, be honest and tell us and we'll return the favour and give you the stage. Nobody should try to BS anybody here!

More Information: A Letter with Genuine Relevance to Neuropathy Sufferers

Further general information can be found here:

What Is Neuropathy? A Growing Problem

Why Do People With HIV Suffer From Neuropathy?

How Neuropathy Is Currently Treated

This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.




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