4 Responses To Stigma Against Disability
As a 35-year-old, fairly active woman with ankylosing spondylitis (AS), I've come up against some pretty inaccurate and aggravatingly annoying ideas and questions about this disease over the years. I try to have patience with people and gently educate them about what AS is and how it affects me, but there's still such a strange stigma attached to chronic illness.
While these stigmas deeply affect people who are visibly disabled, the judgment and ignorance around "invisible" illness are very real issues. The stigma is deep-rooted, well-documented, and simply can't be debated — and everyone is responsible for breaking the stigma, including doctors.
Even healthcare providers can perpetuate stigmas
In fact, the Journal of the American Association of Nurse Practitioners found that even clinicians need to be sensitive to the stigmas ill people face: "[Chronically ill] individuals often become shamed, ostracized, isolated, discredited, and socially and economically marginalized....Stigma is based on visible or nonvisible health conditions and can be both externally imposed or perceived in a process of self-stigma."1
Stigmas, in this context, are negative ideas or attitudes (which may or may not be discriminatory in nature) against someone due to their disability. Sometimes it's so insidious we don't even realize that it's a problem.
If we all were more cognizant of how stigmas impact patients, we'd create a more empathic society. This would lead to further social accessibility and hopefully less pain and isolation.
Things I've heard people say about my AS
Here are some of the things I've heard either directly (or indirectly) about AS and some of my ready responses. Half the time, I ignore them and move on with my life because it's not worth it. But there are times when I say some version (with less or more attitude) of the below responses.
- "But it probably won't change your life that much, right? It doesn't look too bad." This response pisses me off because I'm pretty sure they don't have X-ray vision. Because if they did, they'd see that it is that bad. Do I have to be bleeding on the floor to be believed? Never make assumptions about if something is "that bad" and don't offer up platitudes like, "it probably won't change your life." Because it's rude. It is not helpful. And it's ignorant — which just makes you look bad.
- "My grandma has arthritis. I totally get it." No, you do not totally get it. Your grandma's arthritis is horrible, but this type of arthritis is usually caused by overuse and age. My inflammatory disease is very different things. My pain is from systemic inflammation that attacks my tissues, joints, and organs. It hit me when I was 25. It is very different. According to the Hospital for Special Surgery, "Osteoarthritis is caused by physical use – wear and tear of a joint over time (or, occasionally, over a short time as a result of an injury). Inflammatory arthritis is a chronic autoimmune disease in which your immune system misidentifies your own body tissues as harmful germs or pathogens and attacks them."2
- "I do yoga for my back pain. I can send you my class information. My teacher is great. It'll probably help you a lot." Thank you. I already know all about yoga, and I'm already managing my disease with the help of my doctor. While I'm super glad yoga helps your back pain, I actually need to take medication to manage my disease. And back pain is only one symptom of AS. It's systemic.
- "You quit your job? Wow." (The inference here is that I quit my job and I'm not even that "sick.") Yes, I quit my job. I may look perfectly healthy and walk just fine, but my pain, brain fog, and exhaustion were too much to manage with a full-time job and a commute. Don't judge me for making a decision to support my health. It was a privilege to be able to leave, yes, but it is not as easy as it looks.
What sort of nonsense have people said to you about AS? How do you deal with it?
I am living with....