What Not to Do When You See a Sick Person in Public
She looked at me with pure sincerity in her eyes and asked me a question I definitely haven’t been asked before, and now I cannot assume I will never be asked it again.
“But how do you poop?”
In her defense, it was a fair question. She asked about my health and I had just explained to her how I have gastroparesis (paralysis of the stomach), and terrible gastric motility in general. In fact, the only part of my GI tract that somewhat works like it should is my intestines, and I basically suck at swallowing, digesting and everything that goes along with it. So I could imagine why she would be curious. Sensing her sincerity, I just chuckled and said, “Laxatives and a whole lot of prayer.”
You would think moments like this would rarely happen to any human. But since I’m chronically ill, and especially because I have rare diseases, I get funny, weird, ignorant or just plain rude comments all the time. I’ve had people try to discreetly rub my feet with essential oils, in attempts to “cure my autoimmune disease.” Multiple strangers have asked to “zone my feet,” and a few have even recommended coffee enemas.
I had to use a wheelchair in Costco once during a flare day, and an older lady asked me questions about my health, which I honestly answered. She proceeded to corner me for 30 minutes and tell me how all of my health problems would be magically cured if I only ate baby food. Another time an old man demanded I “get out of my wheelchair” because I’m too young for it and only old men like him should be able to use it. Near strangers have walked up to me with naturopathic book recommendations they say are sure to save my life when they had only been told the name of some of my diagnoses five minutes earlier.
Many have told me I’m too young to have the diseases I have, or that I look “too healthy” to be sick, as if your outer appearance always dictates your inner pain. I have been told that I’m wasting my life because currently, I’m unable to work or go to school. But my favorite is when people get accusatory and say, “You’re too positive to be chronically ill.” Apparently, every sick person has to be a black hole of endless misery.
Multiple people have told me of their aunt, uncle, cousin or dog in my situation who has died a slow and painful death, which is always comforting. Some who barely know me have even had the gall to ask if my “cycle” is regular.
It seems as though when you are public and open about your invisible illness, you instantly go from another face in the crowd to being on public display. It can be quite humiliating. What most people don’t understand is when symptoms are visible, or someone openly tells you about their illness, you are getting a peek into one of the biggest struggles of their lives. Many will comment on these glimpses like they aren’t personal and vulnerable when they only know a small portion of the story, not the big picture of your condition or what you are really going through.
So the next time you are going to comment on someone’s illness that you know nothing about, I want you to ask yourself one simple question: Would you say this to a healthy person?
Think about it. Would you smile at a recent widow at her husband’s funeral, put your hands on her shoulder and say, “At least we’re not at divorce court?” Because so many tell people with rare, life-threatening diseases, “At least it’s not cancer.”
Would you ask a healthy person about how good their bowels work, or how frequent their cycle is? Would you try to rub magic herbs on their feet to make all their problems go away? I hope and pray you answered something along the lines of, “Of course not!” or, “That would be weird!” to all of the scenarios listed above, because in all honesty, illness is just like any other hard-to-handle situation in life.
More often than not you don’t want to give the intimate details of your life to someone you barely know. More often than not, you don’t want weird, blunt and sometimes creepy recommendations on how all your problems could be fixed if you would just listen to them. And let’s be honest, you can’t really give advice on something, especially a medical condition you know nothing about.
So when talking with someone about their health, don’t run to them with a magic cure. Go to them with open arms and a listening ear. If you want to know about their condition, ask honest and sincere questions. But in return, expect honest answers. Honestly, sometimes it means the world when someone takes the time to google your illness and ask educated questions about it.
But also know not everyone is open about their illness, and that’s OK. The life of someone with a chronic illness can be so foreign and intimidating to those who have never experienced it before. I’ve watched those in my life desperately search for something to say or some way to help, but sometimes the most powerful thing you can say is nothing. We often think our words and our opinions need to be shared. But more often than not, it’s the time we give that ends up being the most important.
So if you have a friend, loved one or acquaintance who is sick, stop searching for the right thing to say. Put down the book on coffee enemas and juice cleanses. Just because you’re sure you heard that’s what saved your brother (step-cousin, dog, aunt, niece) who almost died of the same disease. Grab a chair and get to know the person before you dive into a very personal part of their life.
Photo by Radu Florin on Unsplash