Editor’s note: Ben Mattlin, a Los Angeles-based writer born with spinal muscular atrophy, is the author of several books on disability. Her latest, titled “Disability Pride,” is out in November from Beacon Press. The opinions expressed in this comment are his own. See more reviews on CNN.
My wheelchair hides my biggest disability.
Most people think that having spinal muscular atrophy—a neuromuscular weakness I’ve been born with—is the worst thing that’s ever happened to me. It is not. It’s not even my most pressing, most pressing, or incurable medical problem.
That dubious honor goes to…ulcerative colitis.
My UC is more or less well managed, thanks to a lot of effort. But its symptoms are incredibly erratic and unpredictable. It’s considered an autoimmune disease, a still-evolving classification believed to include lupus, rheumatoid arthritis, multiple sclerosis, celiac disease, Graves’ disease, Lyme disease and many more, according to “The Invisible Kingdom” by Meghan O’Rourke. These and other chronic diseases interrupt the lives of nearly 200 million Americans, according to the Centers for Disease Control and Prevention, including another 16 million with prolonged Covid, according to the Brookings Institution.
Often, such disorders are considered “invisible” because they are not obvious to the viewer. But that doesn’t mean they don’t hurt and 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 for those of us dealing with complex chronic illnesses.
The truth is, if you also have the opposite type of debility—which is very obvious, like me—it’s easy to forget or at least downplay other illnesses. That is, until a terrible leak reminds you.
Many disabled people like myself have multiple conditions, some of which may go undiagnosed. The CDC estimates that more than 38% of disabled American adults are obese, 16% also have diabetes, and 12% also have heart disease.
Many people, including many in the disability rights movement, often overlook disabilities that may not be obvious, including mental illness. But they are just as important, and stigmatizing.
To be honest, I have been complicit in keeping my illness, which is not obvious, hidden. Despite publishing several books and essays about nearly every embarrassing detail of my life as a proud disabled person—someone who has learned to love her bowed arms and legs and crooked spine—I’ve inadvertently neglected to reveal the full extent of my ongoing struggle. intestinal inflammation
The reasons for this fraud seem obvious: First, it’s embarrassing and, second, it’s nobody’s business. But perhaps by acknowledging the beast, I can soften its blows.
Ultimately, ulcerative colitis and other inflammatory bowel diseases, such as Crohn’s disease, are nothing to be ashamed of. Like all autoimmune diseases, they can be treated but not cured. Doctors offer a variety of therapies, including aminosalicylates (pills, suppositories, or enemas), antibiotics, and steroids. Perhaps the most effective treatments are immunosuppressants, which reduce the ability to fight infection, something I really don’t want in the age of Covid.
Surgery has only helped me to a degree. A few years ago, after a life-threatening infection with Clostridioides difficile-related colitis, I had my colon removed. Since then, I have carried a colostomy bag under my clothes. The small part of my rectum left by the surgeon can still be inflamed, however, and ooze odorless mucus that occasionally stains my pants. I have no control over it. Flareups can be excruciatingly painful, like a bad cramp that presses against the bladder. And yes, accidents happen from time to time.
But usually, the only outward sign is a frown on my face, and maybe my grumpy mood. Always sitting down helps. No one knows if my pants are stained. But if I ever have to get up from my chair, for example to go to the dentist or get on a plane, I panic. I can see you dying of shame.
In online forums you read about various pseudoscientific remedies: raw kombucha, aloe vera gel, even abdominal exercises. Trust me, I’ve tried a lot of them. But I have doubts about advice from strangers. That may be another reason I’ve kept my gut affliction down. I don’t want to attract salespeople.
A more honest explanation is that very little of my life is private, so I’ve been protective of the few secrets I have. Anyone who sees me immediately knows many great and personal facts about me. For example, in addition to not being able to walk, I need help with daily activities. Incorrect assumptions are also common, of course, such as that I can’t make up my own mind in restaurants. But even if I can’t pretend that walking is an option, I can trust that my gut is fine.
Make no mistake: my spinal atrophy affects my entire life. But that’s not all there is to me. And when it comes to what can revolutionize my day and my sense of well-being the most, there’s no contest. Ulcerative colitis is much more invasive because it sticks to me, and no one understands when I suddenly blink for no apparent reason.
I wish more people would realize that there are all kinds of disabilities, even if you can’t tell by looking at them. Learning about invisible disabilities is an important first step to better understanding and ultimately building a more inclusive society.