My name is Susan, and I’m a sick-shamer. Well—I used to be. I always suspected that illness was something that people brought on themselves, and I didn’t mind saying it. People with pain just needed to be braver. Pain was a normal part of life, and some people just were able to “suck it up” and cope better than others. People with IBS needed to eat more veggies. Diabetics needed to control their diets and exercise more. It didn’t feel mean or judgmental to believe this way; after all, there is a logical connection between behavior and illness. For example, cigarettes cause lung cancer. I just logically placed actions with consequences.
My doctors were so impressed with my health that at my yearly exam four years ago, they told me to keep doing exactly what I was doing. All my tests were perfect. I took comfort in the idea that I would never fall ill, because I was doing everything right. Suddenly, a couple of years ago, all hell broke loose. Since then, I’ve been in the ER several times with severe pain. Sometimes it has been so bad that I could barely breathe or walk. I’ve also been diagnosed with asthma. I, who used to refuse to even take a Tylenol for a headache, am taking a handful of pills every day just to keep breathing and moving. A neurosurgeon, orthopedist, pain specialist, and a few other doctors are working to keep me functional and figure out what is happening within my body.
Some of my symptoms started to make sense several months ago when my daughter was diagnosed with Ehler-Danlos Syndrome (EDS). EDS is a disease of the connective tissue that, in her case, causes her joints to be loose, resulting in frequent dislocations, partial dislocations, and chronic pain. It also comes with chronic fatigue, food intolerances, and a number of other uncomfortable and debilitating conditions. Since EDS is a genetic disease, and many members of my family seem to have it, it’s pretty safe to assume that this is what I have been dealing with. So now, here I am, sick in ways I never would have imagined. I didn’t ask for any of it. My situation has made me question all the assumptions I made about people who are ill. If we’re battling an illness, we have to take extra care of ourselves, both mentally and physically. But now I know there’s so much that is out of my control. Some days, I’m just going to hurt, or be exhausted, and there’s very little I can do to change that.
So, how should you respond to sick-shamers? What do you say when someone tells you that everything would be okay if you just did yoga, get more sleep, or became vegan?
Below are 3 rules that I follow when dealing with sick shamers:
1.Keep it simple.
Your story is a unique and important one that deserves to be told. On the other hand, someone who is actively sick shaming you isn’t ready to hear your story. Simply saying, “It doesn’t work that way” or “My situation will not be helped by that” will make you feel heard and likely put an end to the conversation. Bringing awareness is incredibly important, but now isn’t the time.
Keep an open mind.
Yoga or eating healthy obviously won’t cure your chronic illness, but sharing with a sick shamer what you have tried in the past or what you are willing to try may be beneficial. Make sure to express any limitations you may have, and speak up for yourself if the individual isn’t respecting your limits.
Remember the golden rule.
This is the hardest rule of the three. Sick shaming is incredibly rude. The fact that it’s normalized doesn’t make it okay. However, many sick-shamers genuinely do not realize that what they’re saying is wrong. Backtalk and sarcastic remarks only come across as mean, and make the person less willing to change their ways after facts are presented.
To the people out there who are still okay with sick shaming, I hope you never have to learn the lesson the way I did. I hope you stay healthy and happy. To those of you who say I don’t look sick, I say thank you and move on. If my need for pain medication and my slow speed ahead of you at the grocery store make you uncomfortable, rest assured that I would gladly trade you places and let you shuffle in my shoes for a day.