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.
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.
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:
HIV and Neuropathy: How to Avoid Becoming a Nervous Wreck
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 is 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 website and blog where practical information, hints, tips and experiences for patients could be gathered together in one place.
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.
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