Advertisement
The Body: The Complete HIV/AIDS Resource Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol
HIV/AIDS Blog Central

The Self-Worth Analysis, or How Neuropathy Can Steal Your Social Self

By Dave R.

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.

Advertisement
Hello Neuropathy!

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.

Send Dave an email.

Get email notifications every time Dave's blog is updated.

See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy

Reader Comments:

Comment by: Kurtis (Saint Petersburg, FL) Tue., Feb. 14, 2012 at 12:24 pm EST
Summed up perfectly. The only line missing was the "but you look so good", Since health is determined by other by how they view you physically.
Reply to this comment


Comment by: Bob (Council Bluffs, Iowa) Sat., Feb. 4, 2012 at 2:22 pm EST
Thank you for posting this. I am very limited and the neuropathy is so painfull, i walk with a cane when I can walk. i have a power chair comming. My partner is ready to leave because he doesn't understand. Im just being controling or yada yada yada you ddont feel good get over it. I emailed this page to him. I do feel alone, isolated, and very misunderstood. I can't write anymore as my neuropathy is accleteated by begingn tremmors. Thanks for sharing your story, it helps me.
Reply to this comment
Replies to this comment:
Comment by: Dave R. (Amsterdam) Mon., Feb. 6, 2012 at 5:48 am EST
Hi Bob,
I'm so sorry to hear of your predicament and wish there was something concrete I could do to help. I hope you have some friends around you who will give you the support you need but if not, please contact your nearest HIV support group or organisation, to get some help if you feel you need it. They will almost certainly know of someone in the region who will want to hear your story. There is no reason why you should face any of this alone.
I wish you all the best.


Comment by: Craig (san francisco, ca) Fri., Jan. 27, 2012 at 8:44 am EST
Your blog is so helpful and so totally accurate, I can't tell you how liberating it feels just reading it.
Reply to this comment


Comment by: Philip D. (San Francisco) Thu., Jan. 26, 2012 at 12:09 am EST
A belated welcome to theBody Blogs.

I've learned a lot from your posts and particularly liked the first paragraph in this one. I'm not sure I could have found the words to adequately describe the feeling of testing HIV positive, but you sure did.

Thanks for sharing your knowledge and experiences.

Best,
Reply to this comment
Replies to this comment:
Comment by: Dave (Amsterdam) Thu., Jan. 26, 2012 at 1:05 pm EST
Thanks Philip, I appreciate it.


Add Your Comment:
(Please note: Your name and comment will be public, and may even show up in
Internet search results. Be careful when providing personal information! Before
adding your comment, please read TheBody.com's Comment Policy.)

Your Name:


Your Location:

(ex: San Francisco, CA)

Your Comment:

Characters remaining:
BLOG:
HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


Subscribe to Dave R.'s Blog:

Subscribe by RSSBy RSS ?

Subscribe by Email


Recent Posts:


View All Posts


A Brief Disclaimer:

The opinions expressed by TheBody.com's bloggers are entirely their own, and do not necessarily reflect the views of TheBody.com itself.

Advertisement