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The Lemming Compulsion, or How People With Neuropathy and HIV Will Grab at Straws

By Dave R.

January 10, 2012

A short post on my other blog started me thinking. How many people deliberately avoid acting responsibly, to take their minds off their medical problems? Is it one of those things that nobody talks about because everybody does it to one extent or the other? Is there an iceberg, of which the study at this link is only the tip?

They're called "self-care strategies" or "unhealthy behaviours," which patients use to manage or alleviate the symptoms brought on by HIV-related neuropathy. Recent studies have brought the problem to light but despite Google's search potential, you can count the number of scientific articles explaining why this happens and what is being done about it on one hand. This is may be because it's seen as a social rather than a medical problem, although the results can result in extra medical consequences.

I suppose because it's fairly obvious why this happens, further research may not be thought necessary but in an ever-growing population of HIV-positive people with neuropathy, surely it's important to identify those people whose pain and discomfort is so awful that they feel compelled to turn to "unhealthy behaviour" to self-manage it? Conventional medicine has relatively few effective solutions to offer and "suck it and see" treatments frequently result in disappointment and can have side effects that are almost as bad as the problem itself. Little wonder then that people turn to practices that actually give them pleasure or relief, and make neuropathy fade into the background for a little while.

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Yes, we all raise our arms in horror and know that this syndrome can create a vicious circle where the addiction eventually feeds the problem -- but you can understand it can't you, and it's so easy to be judgemental! What's more, turning to "diversionary behaviour" has long been recognised as a reaction to HIV itself, let alone an extra disease that can make life miserable. Neuropathy patients mustn't hog the limelight; people living with HIV can end up with all sorts of serious extra illnesses; neuropathy is just one of them but what is relevant here is the reaction, not the cause.

So what are these "unhealthy behaviours?" The very name conjures up schoolboys under blankets in boarding schools and their associated confessional guilt (something many HIV-positive people are long used to!) but this is referring to adults who've seen a bit of life and have already learned a thing or two. Half the problem may be that everyone knows why you're not supposed to do it but does it anyway because it feels so damned good! You may be surprised how many of these behaviours exist, how familiar they are and how easy it is to use and abuse them.

  1. One of the commonest escape routes from all sorts of problems is alcohol. It dulls the pain ... need I say more? The problem is that alcohol abuse can make neuropathy worse.
  2. Smoking: the great stress-reliever for smokers and illogical for non-smokers. You don't need reminding what the consequences can be.
  3. Comfort food! Don't laugh; sometimes if your social life has disappeared and the TV is your only friend, a constant supply of junk food can feel so good, even if the craving becomes an addiction.
  4. If your life is determined by the extent of your pain, you may find physical exercise so demanding that you adopt a sedentary lifestyle, in front of the TV, or computer screen, or just behind closed curtains in bed. Shutting out the real world is an attractive option if your previously active lifestyle has been stopped in its tracks though the longer you lie there, the less you want to get up.
  5. Shop till you drop! Or until you max your credit card! Yep, another compulsive diversion which some people use to take their mind off their pain. Don't judge, it's been proved that the brain responds chemically to the pleasure of a new gadget -- it's only a problem when the debt stress becomes a medical problem to add to the neuropathy.
  6. Gambling is another addiction trap, especially with the growth of on-line gambling. Imagine you're stuck at home; your feet are killing you and your muscles refuse to work. You let your fingers do the walking and look for the thrill of winning and then losing your hard earned cash.
  7. Some people find that the pressure on their minds and bodies of taking a barrel load of pills every day becomes too much. Their HIV regime plus the medication they may be taking for neuropathy, can take its toll and they take an unauthorised break, or stop altogether. It seems baffling if you're thinking straight but maybe you're not suffering from endless side effects; extreme tiredness; pain and no visible sign of improvement. If you were, you might understand that sometimes it just becomes too much to handle. Hopefully, friends, family and doctors can help before serious damage is done.
  8. On the other hand, many people with HIV and neuropathy take refuge in recreational drugs. Whether illegal or not is not the point, the fact is that people are desperate enough to need some sort of high to mask either physical or emotional pain, or both.
  9. Finally, for as long as the neuropathy allows, some people find solace in sexual contact; as much and as often as possible because it confirms your attractiveness still exists and "proves" you're still alive. For many people just the warmth of another body gives them the physical comfort they need. You may also become reckless just because you know it's the last thing you should do.
  10. It has even been known for people to turn to petty crime; not for gain but for attention. The thrill and danger is subconsciously matched by the need to be noticed.

Of course many of the above are extreme examples of what apparently is surprisingly commonplace amongst people in pain and I'm definitely no psychologist, doctor or social worker but I think I understand the drive behind each and every one of the "unhealthy behaviours" mentioned here.

The point is, do family, loved ones and friends understand? Does society understand? Does our own community understand? If not, where can the desperate person with HIV and neuropathy go for help? Who can he or she turn to? Who's going to look out for the signs when the person himself does his best to hide his or her need? Many people with HIV, who've been on the meds for years and have other medical problems as well, are growing older and are tiring of the fight. Isn't the lesson here that these people need a support group involving partners, family and friends? However, especially at this time of year, spare a thought for the potentially largest group of all ... the lonely, single man or woman, who has to grow older and battle the demons alone! To criticise is easy; to lend a helping hand much less so.

UPDATE 1/17: I should add here that unlike the first three posts on this blog, this post is less factual and more a reflection of my own opinions and thoughts. That said, it is based on the results of many studies of behavioural coping strategies for people with both HIV, neuropathy and chronic pain. A quick Google search for "negative coping techniques," "unhealthy behaviour strategies for coping with HIV and neuropathy," or "social behaviours to deal with chronic pain" will reveal the many articles and papers on this subject that have been published. Some of my reference sources are shown here below:

Stress - Complications

Coping With Chronic Illness

Unhealthy substance-use behaviors as symptom-related self-care in persons with HIV/AIDS

Unhealthy behaviours for self-management of HIV-related peripheral neuropathy

Coping Mechanisms

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy

Reader Comments:

Comment by: Mike (Baltimore, MD) Thu., Jan. 12, 2012 at 5:31 pm EST
I have to say, it's good to see this article! Yes, neuropathy is awful. Even worse are those doctors who want to give one pill after another pill to resolve something that doesn't resolve! I did the comfort food thing and the sex. I'm not into the drug scene, but I can understand someone going that route to rid themselves of the pain and loss of feeling from neuropathy.

I have turned to B vitamins, a more plant based diet which has helped but has not stopped it. I have learned to adjust to it. Yoga helps because I have to focus away from the stinging feeling, in my feet, my eyelids, my finger tips and my arse!

The one pill I took that helped the best was cymbalta, but, then if affects the mental state. Or slows it rather. Working became a hasstle because the stinging makes it extra hard to listen to others, to concentrate on the work that needs to be done, BUT DOCTORS don't listen to this!!!! Well, they do, if you keep looking and finally find the doctor who will listen. At least after two years, I found a couple of better ones.

Now, I live with it and I accept at times, it will be worse than other times. I force myself to get up and get out for a walk. It is NOT EASY!

Thanks for the article again!
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Comment by: Rain (Louisville,KY) Tue., Jan. 10, 2012 at 6:36 pm EST
WOW ! ...
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Comment by: Craig (san francisco, ca) Tue., Jan. 10, 2012 at 4:22 pm EST
Reading your article brought tears to my eyes.
I didn't even know anyone else was dealing with this besides myself. I work so hard day after day just to stay alive. The pain from neuropathy and having a strain of HIV they can't seem to get under control is undescribable. I would never get out of bed but just being in bed is so painful because parts of skin feels like someone has lit me on fire many days. Just putting on socks feels like being cut with razor blades. Yet I keep trying, I keep getting these great jobs and then loosing them in a couple of months because I can't even show up half the time. I've gone from rags to riches to rags again and again. I look around me now and where I use to feel so lucky to have what seemed to be an endless amount of close friends, now I'm alone. Loosing them because I took drugs or spent to much money on things I thought would help.
Tomorrow I will get up again with a positive attitude ready to fight, but today I'm already so tired I have no fight left in me and it's only 1pm.
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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.


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