Monday, August 19, 2013

5 Things I Wish I Could Tell People About My Invisible Illness

 Rheumatoid Arthritis: you don't "get it" until you get it. This is a phrase shared within the rheumatoid patient community to explain our interactions with able-bodied people. It can easily be applied to invisible illness in general; those who aren't dealing with it simply do not understand the realities of your chronically ill world. When people see brief glimpses of your disease, say on Dr. Oz or a new pharmaceutical commercial, they often believe they've gathered a true understanding and unique insights into your illness which they simply must share with you. Dealing with rheumatoid arthritis it's particularly challenging when people do not understand the difference between "wear-and-tear" osteoarthritis and inflammatory autoimmune arthritis. The former can be treated with aspirin, the latter attacks your internal organs and kills; yet people constantly confuse the two and offer rheumatoid arthritis sufferers suggestions for osteoarthritis pain.

After 7 years of living with chronic joint pain caused by autoimmune arthritis, I've learned that it's best to be as tactful as possible in dealing with people's questions, comments and concerns about my disability. Most people who offer advice or ask questions are doing so out of concern, and genuinely want me to start feeling better; they don't understand that I've answered the same questions and comments a million times before, that their anecdotal evidence isn't remotely valid as science, and that I'd really rather focus on what I can do instead of what I can't. Because most people have only the best intentions, I try to listen thoughtfully and brush people off as gently as possible, but sometimes I wish I could really tell people where to go.

In the spirit of catharsis, I figured I'd share some blunt-ass things I wish I could share with people so they could start really understanding my invisible illness.

1. If there was a diet that could cure my disease, there would be scientific proof and patients would be singing from the rooftops. Certainly there are some conditions where diet has major implications in health (gluten intolerance in those with Celiac disease, for example) but for most illnesses, there's no one specific diet that will cure you--or even help your symptoms. Usually, people try to tell me about the latest fad-diet that's made it's rounds on Dr. Oz. They talk vaguely about "inflammation" and "anti-oxidants," and make me promise I'll try the diet. Oftentimes, when I'm really desperate, I will try it, often at great personal cost, often sacrificing true nutrition. I've done extended trials with diets including: vegetarian, vegan, gluten-free, soy-free, raw-food, and fasting, and haven't noticed symptom improvement with any dietary changes. What I did notice is that life is a whole lot less fun when you're constantly concerned with what's going in your mouth. Food is one of the pleasures afforded to my crippled body, and I'm a believer that (barring allergies) no food is hurting me in moderation.

2. When I say I need to leave, it means I need to leave. Really. It doesn't mean I just need to sit down for a minute. It doesn't mean I just need a break. It shouldn't require me explaining why, exactly, it is that we need to leave. It means I need to get home now, and I need you to help me leave. Many aspects of my chronic illness aren't pretty: medications have left me with a very uneasy digestive tract, joints get filled with blood, I develop rashes... and I don't want to have to explain any of these to more people than I need to. One of the most dehumanizing aspects of chronic illness is that it strips away a person's privacy-- doctors need to know the most disgusting of physical problems, caregivers are required to help with intensely personal activities of living-- the last thing a chronically ill person needs is to lose this last bit of privacy and dignity in front of others. Our bodies require no explanation.

3. If those supplements could cure me, they'd be called "medications." Snake Oil is alive and well in the 21st Century, only today it's sold under the guise of horrifically expensive "dietary supplements" whose proponents claim treats everything from arthritis to cancer. It's incredibly presumptuous to assume that someone with a chronic illness can afford many of the outrageously priced supplements available on the market, and incredibly naive to assume that a product which has no scientific testing is somehow able to cure a life-threatening disease. My worst experience with a snake-oil salesman was actually with a Social Security Disability contracted psychologist, who insisted that my rheumatoid arthritis would be cured if I simply took these $200 a month gummy supplements, because his wife's friend's sister was "cured of her arthritis" after taking them. This guy then insisted I wasn't disabled because I was able to go to college and hadn't yet tried these supplements. Friend's moms and hairdressers have had similarly serpentine ambitions, and they are generally even harder to shake than the "try this diet" people. In reality, the FDA closely monitors the development of a medication, ensuring it's safety and efficacy; for supplements, they simply rely on the manufacturer to sell a safe product, and only step in once an unsafe supplement has entered the market and started making people sick. Similarly, they do not require supplements to list the ingredients or amount of ingredients contained within.

4. Your religion may comfort you, but please don't force it on me. People don't develop chronic illness as the result of a moral or metaphysical fault, and religious participation only helps patients who thoroughly believe it will-- much like a placebo. Forcing religious participation on those who don't want it (for example, in the form of the laying-of-hands, exorcism, or unsolicited public prayer) is tantamount to assault. Please don't ever insinuate that my chronic illness is part of your god's plan, or that it's a way to test/strengthen my faith-- these perspectives help further the belief that there's something morally defunct about people with chronic illnesses and that some moral change could make them better. This is patronizing. While I respect the rights of others to participate in any religious activity that doesn't hurt others, please don't ask me to subscribe to your dogma just because it will make you feel better. Similarly, while I always appreciate the kind thoughts associated with your prayers, they don't help me to feel any better physically, so don't expect them to. If you'd really like to understand my illness, please try talking about it to me instead of god.

5. No, I'm not too young for this cane. Canes do not have age-limits. Neither does chronic illness. My cane is a tool which helps my mobility and allows me to go places I otherwise wouldn't be able to-- that's it.  It is not a fashion statement or a ploy for attention. Age and ability simply do not correlate. My cane is, frankly, none of your business.