Another fatalistic post about chronic illness and disability is circulating. I’ve seen different manifestations of this attitude elsewhere and I’ve always been a bit confused about the level of defensiveness behind sentiments like this. Here it is:
I’ve been ill for a long time. When I gained weight in 2006, premenstrual dysphoric disorder (PMDD) raised it’s ugly head. I fought against the PMDD until I was cured in December of 2014 by a hysterectomy. But before I was cured, I experienced debilitating brain changes brought on by psychiatry’s misguided efforts to treat what was believed to be a run of the mill mood disorder with loads of toxic drugs and brain damaging electroconvulsive therapy. I didn’t initially choose to take psych drugs for PMDD. I was manipulated and coerced into taking them. When I started taking psych drugs around 2006, the doctors who prescribed the drugs were a lot like rapists. I was not allowed to say no. As time passed, my consent to take more drugs was more like the consent of a person who had been beaten and brainwashed. Despite these dynamics, there were times when the drugs helped–but those times were short lived. And as one drug lost effectiveness, another was always on offer.
I’m still disabled because of the changes to my brain, so I’ve spent years living life as a chronically ill and disabled person. I’m very qualified to speak on this topic. But the sentiment in this tumblr post and similar sentiments I’ve read before in disability community forums puzzle me.
Are chronically ill people so profoundly confused about the genesis of disease that we believe it is due to nothing more than bad luck, bad genes or other happenstance? Are we caught in a sort of Stockholm syndrome type relationship with Western medicine, which attempts to treat symptoms but rarely addresses underlying causes, and often hurts us in the process of offering temporary solutions? Are we so attached to our illness and disabled identities that we don’t want to consider the possibility of life as well or non-disabled people?
Those questions come to my mind as I consider why the post from eritated’s blog seems to have resonated so deeply with so many chronically ill people.
Vegetarians and vegans are less likely to be obese, so recommending vegetarianism or veganism to a chronically ill person is a logical suggestion for the treatment of illness. Exercise likewise contributes to a reduced obesity for many people, so is also good advice. Yoga is a form of exercise, so it can contribute to lower obesity and therefore improved health. Some chronically ill people don’t consume nutritionally balanced diets, so vitamins might help a person to get nutrients that are missing from the foods they eat.
Stopping all medications may also be helpful for some people. I’m not the only person who has problems metabolizing medications. For people like me, stopping medications that offer debilitating side effects instead of healing for the original problem is a very good idea.
Sleep loss affects health in a negative way, so advice to get sleep a good amount of sleep is sensible. Preliminary evidence suggests pot can be a useful treatment for some conditions, such as epilepsy, but it too can have side effects.
That leaves us with ‘natural remedies’—a description so vague that I don’t think it can’t be addressed here, and colon cleansing, which I agree doesn’t seem to be a sensible treatment for anything—even an itchy rectum.
We’ve now established that most of the advice that eritated doesn’t want to hear is supported by evidence as beneficial. So I’m back at square one, wondering why eritated and people who celebrate such posts are so hostile towards good advice.
I think the perspective of eritated and chronically ill people like eritated is similar to the following analogy: Imagine I have a decently built small sedan, but it’s getting a little older. Parts are starting to wear out and replacing them is expensive and time consuming. I take my car to the mechanic, who explains that my car needs regular oil changes, which I haven’t been getting, and that a better quality gasoline could help prevent buildup in my engine. A new car might be able to handle any grade of gasoline, but my older model needs a little more TLC.
The problem is—I can’t afford a high grade of gasoline for my car—but instead of explaining how better gas is out of my reach, I rage against my mechanic’s sound advice and resent that he even offered it. I take my car home and curse its inability to function well without regular maintenance. Maybe I even call all of my friends and complain about how big an asshole the mechanic was for even suggesting that I follow basic engineering precepts to keep my car running. Couldn’t the mechanic have at least offered me a small tweak to get me through the next 10,000 miles?
Another mechanic with the same qualifications as the first learns of my dilemma and reaches out to me. She has a superfluid rep visit her shop a few times a month and offers me a less expensive fluid that can free me from the hassle of getting regular oil changes and buying quality fuel. She assures me her superfluid has research behind it and is safe to use. The superfluid is more accessible than regular oil changes or quality fuel. I try it once and it gets my car to rev in a way it hasn’t revved in years. But there’s a big problem. After a few months on superfluid–parts on my car start to break that generally don’t break on cars until they have 300k miles, my car only has 90k. The mechanic who sold me the superfluid assures me it’s just a coincidence. Since she’s such an awesome salesperson, and I so badly need a running car, I believe her. I want to believe her. When critics suggest the superfluid is only a temporary fix and that it will destroy my car in the long run, I respond that they are superfluid shaming and promoting broken car stigma. My critics, duly chastised, slink away.
Like cars, human bodies require certain conditions to attain optimal functioning and avoid breakdowns. Many of these conditions are difficult to attain when a person has limited financial resources, limited access to transportation and recreation, and limited access to education that can help them recognize which advice is sound and which advice is hurtful.
There are also limitations directly associated with disability. In my case, I experience profound sensitivity to sound is a barrier to environments like gyms and even some parks where a less sound-sensitive person might be able to exercise. My inability to multitask is a barrier to creating healthier meals, because cooking usually involves multitasking. But these barriers and limitations don’t equate to a good reason to bitterly reject sound advice that could improve my health. Instead they create opportunity to expand the conversation on the specific needs disabled and chronically ill people may have to have addressed before long term healing can take place.
I’ll continue to read and listen to advice with an open mind. I’m not attached to identifying as ill or disabled. I don’t believe that my health challenges are inevitable or insurmountable. I believe that environmental and lifestyle changes are absolutely the key to recovering from many, but not all, illnesses and diseases.
I understand that some diseases are not curable, and no amount of nutrition or exercise will reverse them. Likewise, some disabilities are permanent. I understand that people affected by incurable diseases or permanent disabilities probably aren’t interested in hearing about remedies that work for others. But many other chronic conditions are treatable or even reversible. Illnesses that pharmaceuticals barely keep at bay might be completely curable through nutrition, exercise, and other lifestyle changes.
If other people with health challenges choose to dismiss good advice, I can only wish them well while simultaneously knowing that pills and wishes will not sustain them in the long run. They can choose for their bodies whatever they like, but if the choices are unhealthy, they can anticipate longer periods of illness. To those who respond in defense of drugs over nutrition and exercise, I challenge them to reevaluate the long term effects of their choices in 20 or 30 years.