Editor’s Note: Ben Mattlin is a Los Angeles-born author with spinal muscular atrophy and the author of several books on disability. His latest book, “Disability Pride,” will be published from Beacon Press in November. The views expressed in this review are his own. See more opinions on CNN.
My wheelchair masks my worst disability.
Most people probably think that Spinal Muscular Atrophy – the neuromuscular weakness I’ve had since birth – is the worst thing I’ve ever experienced. It is not. It’s not even my most annoying, serious, or vexing untreatable medical problem.
This dubious honor goes to… Ulcerative Colitis (UC).
My UC is more or less well managed thanks to a lot of effort. But its symptoms are very erratic and unpredictable. According to Meghan O’Rourke’s “Invisible Kingdom,” it is considered an autoimmune disease, a still-developing classification thought to include lupus, rheumatoid arthritis, multiple sclerosis, celiac disease, Graves disease, Lyme disease, etc. These and other chronic diseases disrupt the lives of nearly 200 million Americans — excluding another 16 million chronically ill with COVID-19, according to the Brookings Institution, according to the Centers for Disease Control and Prevention.
Such disorders are often considered “invisible” because they are not obvious to bystanders. But that doesn’t mean they don’t hurt and don’t affect people every day. That’s why, in 2014, the Invisible Disability Association designated the third week of October as Invisible Disability Week to help raise awareness and support those of us dealing with complex chronic conditions.
Frankly, when you also have the opposite weakness – a very obvious one, like mine – it’s easy to forget or at least minimize the other weaknesses. That is, until the terrible outbreak reminds you.
Many people with disabilities like me have multiple conditions, some of which may be undiagnosed. The Centers for Disease Control and Prevention estimates that more than 38 percent of disabled American adults are also obese, 16 percent also have diabetes, and 12 percent have heart disease.
Many people, even many in the disability rights movement, often overlook less obvious disabilities, including mental illness. But they are just as important — and just as stigmatizing.
To be fair, I’ve been hiding my not-so-obvious ailments. Despite publishing several books and articles about nearly every embarrassing detail of my life as a proudly disabled person — someone who learned to love his emaciated limbs and crooked spine — I inadvertently neglected to reveal I am with intestinal inflammation.
The reasons for this deception seem obvious: first, it’s embarrassing, and second, it doesn’t concern anyone. But perhaps while acknowledging the beast, I can soften its fangs.
After all, there is no shame in other inflammatory bowel diseases like ulcerative colitis and Crohn’s disease. Like all autoimmune diseases, they can be treated but not cured. Doctors offer a variety of treatments, including aminosalicylates (pills, suppositories, or enemas), antibiotics, and steroids. Perhaps the most effective treatment is immunosuppressants, which reduce your ability to fight infection, which I really don’t want in the Covid era.
Surgery has only helped me to a certain extent. A few years ago, I had my colon removed after a life-threatening colitis-associated C. difficile infection. I have since put a colostomy bag under my clothes. However, the little rectum left by the surgeon was still inflamed and oozing tasteless mucus that stained my pants intermittently. I can’t control it. A sudden onset can also be very painful, like a severe spasm pressing on the bladder. Yes, accidents do happen from time to time.
But usually, the only outward signs are a frown on my face, maybe my grumpy mood. The fact that I’m always sitting helps. No one knows if my pants are dirty. But if I had to get up from my chair – like to go to the dentist or get on a plane – I panicked. I imagine dying in shame.
On online forums, you’ll see pseudoscientific remedies—raw kombucha, aloe jelly, and even abs. Trust me, I have tried a lot. But I’m skeptical of strangers’ advice. This may be another reason why I keep my gut disease low. I don’t want to attract hawkers.
The more honest explanation is that my life is rarely private, so I’ve been protecting the few secrets I have. Anyone who sees me immediately knows some big and personal facts about me. For example, not only can I not walk, but I clearly need help with various daily activities. Of course, false assumptions are also common – for example, I can’t make up my mind at a restaurant. But even though I can’t pretend that walking is an option, I can trust my bowels to be fine.
Make no mistake: My spinal muscular atrophy has affected my entire life. But that’s not all I have. When it comes to most upending my day and my happiness, there’s nothing to argue about. Ulcerative colitis is much more invasive because it creeps up on me and no one understands when I suddenly wince for no reason.
I just wish more people were aware that there are various types of disabilities – even if you can’t tell by observation. Understanding invisible disabilities is an important first step in building a better understanding and ultimately a more inclusive society.