January 20, 2012
Allow me to imagine a scenario: You've been there before remember ... with HIV. The day before your diagnosis you were more or less a fully-functioning part of society, even if that wasn't particularly the aim and the day after ... you weren't. That's not to say that you ceased to exist; your role just changed that's all. It's a two-way process; society looks at you differently and you see society as something outside yourself. For many people, it's the first time they've been forced to examine their position in the world and for many people it's a real shock.
Many things you take for granted are changed forever by those three letters after your name. Even within your own subgroup of society; gay straight or whatever, you're seen as a different person after you become HIV positive. Unfortunately, it's a fact of life and we all have to get used to it. For some people it's an easier process than for others but eventually, we accept our new position in society and settle down, however uncomfortably, to get on with our lives.
So HIV bit a chunk out of your self-confidence and presented you with new challenges. These centered mainly on health and relationships. If you were lucky, your friends and family and partner stuck by you, or you found new ones without too much trouble. Again, if you were lucky, you moved on to the medication and your life also moved on in relative good health, towards a normal life expectancy. Many people are that lucky but equally many aren't and every set-back makes you realize that having HIV in your life makes you a different person. Yet however bruised, you're still standing. You're constantly reminded that twenty years ago you probably wouldn't have been but you're thankful for small mercies and that the virus can be suppressed.
At the beginning, neuropathy doesn't seem so bad. A little numbness here, some tingling there; maybe some extra sensitivity or pain but generally it's something irritating that you can live with. You mention it to friends and doctors and reactions are pretty neutral and you go on with your life, a little concerned but not enough to keep you awake at night.
It's when (and if) it progresses that the problems start. Let's skip the progression details. If you're suffering from neuropathy, you know only too well how that goes and if you're looking for information, previous posts on this blog will help.
Neuropathy symptoms can end up being so severe that you are limited in what you can do in a way that you've never known before. Walking distances is a problem; sport and fitness exercises become difficult to impossible and your social life disappears like snowflakes in the sun.
Suddenly, you're once more confronted with feelings you thought you'd already overcome after you became HIV positive. You thought you'd been strong then and felt quite proud that you'd found a place for yourself in the world despite the stigmas and setbacks of HIV. Then along comes another disease which threatens to put your life on hold for an indeterminate time. Other people; even partners, family and close friends can't understand why you're suddenly morose and depressed. They put it down to the HIV, or the symptoms you're trying to describe which they also don't really understand and after a while, begin to lose sympathy and above all, patience.
What does that do to a person?
You begin to think you're stretching your credibility to breaking point. People with whom you have shared your HIV story over the years look at you with tired eyes; they've heard it all before and made enough allowances already ... or so it feels. You can't describe the sensations you're feeling because they're so difficult to put into words.
If you're in pain, you feel as though the whole world doubts you and you begin to re-tell the story about the boy who cries wolf, again and again in your mind. Worst of all, you begin to doubt yourself because there just doesn't seem to be any reason for the neuropathy. Okay you were never meant to die from having sex but at least you knew the reason for your HIV. Neuropathy, on the other hand, just seems like a cruel joke. If your doctor has also told you that you have idiopathic neuropathy but they can't find any reason for the nerve damage and it hardly shows up in the tests, you begin to feel like that person in a coma who is buried alive and can't move or say anything about it. You imagine hearing, "drama queen" being whispered behind your back and before you know it, the self-respect and feelings of self-worth that you fought so hard to maintain after the HIV diagnosis are gone again.
Now of course, not everyone with neuropathy and HIV suffers to this extent, but many do, and it affects every area of their lives. What people need from the medical profession for instance, is a pat on the back, a comforting word and some sustained moral as well as medical support. The problem is that very few in the medical profession know what it's like to have neuropathy themselves and nerve doctors are not paid psychologists, so they give you the cold, hard facts, put you on the first step of the medication windmill and abandon you to the psychological side-effects.
You then turn to your long-suffering friends, family and partners. It's not their fault either: how can they sympathize anything more than superficially, with something they've barely even heard of? You've already learned that patience and sympathy have limits and learning from experience has already taught you that you have to tone down the moaning or be faced with glassy stares and nodding heads. Neuropathy patients then begin to feel isolated and misunderstood. The more the disease progresses, the less they can do and their lives can grind to a frustrating halt.
For instance, no matter how old you are, when you're in constant discomfort or pain, your mind wants you to be as sexual as you always were but the body just won't let you. That in itself is a massive blow to the ego, especially for younger people but also for those who'd been looking forward to becoming sexual beings again after the traumas and complexes of HIV. Suddenly you start to think about how disabled you might end up being. You try this, that, or the other medication and/or supplement and while you might get some relief, nothing goes away permanently. No wonder people may become clinically depressed.
What people don't realize is how much of a shock neuropathy can be -- even to people who thought they knew what shock and awe was with HIV. It comes out of the blue; it's unexpected and seems just so unfair. Your life suddenly begins to shrink, imperceptibly at first but then at an alarming rate, until many end up lonely and socially detached, even though there may be people around them.
The disease is bad enough. It can end up being unbelievably painful at worst and unbelievably irritating at best but even greater than that, is the impact it has on a person's self-image, self-worth and self-confidence.
People have lived through this before, with the doubt and fear that they would be excluded from society by HIV; but the advent of neuropathy can attack an already fragile ego like rust on metal. It's an appropriate metaphor: rust implies that the original hasn't changed -- it's just been eroded and made imperfect to the point of no longer functioning properly.
That the world at large, and the HIV community in particular, is frequently not aware of neuropathy is both surprising and disappointing, and it needs to be addressed. People with neuropathy should only have to deal with the physical symptoms because psychologically and socially they're in safe hands -- if only! That said: if you're suffering ... you're not alone. Try to get in touch with someone else with the same problems. Supporting others is not easy, but a problem shared ...
This piece is written with all due respect to people living with HIV who also have hepatitis C, anal cancer or many other chronic conditions which are arguably more serious than neuropathy and have an even greater impact on their lives.
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.