Things Not to Say To People With Invisible Illnesses, Part One

The infamous ”but you don’t look sick” is usually at the top of the list of things not to say to people with invisible chronic illnesses.

It’s always the same quandary — we are pressured by society to look cute until we drop dead of old age, but when we comply and get all dolled up, no one believes us if we say we’re ill.

Maybe it’s chronic illness—maybe it’s Maybelline.

The cartoon is similar to my makeup routine (as an MCAS patient with rosacea)—it’s not meant to represent anything universal among people with chronic illnesses (although perhaps the need for extra concealer is universal). I wanted to add extra stuff like “contour swollen face “and “draw in outer eyebrow if thyroid is broken” but I didn’t have enough space.

I was sick for six years with a “mystery illness” before I was diagnosed with Lyme. Early on, I really did look sick—very inflamed red skin, no energy, stiff joints, and limited mobility. My face was too inflamed to put anything on it.

I got more obnoxious comments during that time than I did when I got a bit better and didn’t look sick anymore. A lot of them were from doctors. Some of the comments were strange: at one point I had so much back pain that I could only wear sneakers, yet there was one psychologist who was somehow convinced that I was only going to get to the bottom of my medical issues if I wore a business suit and heels to my doctor’s appointments.

I told her I couldn’t wear heels because I had three herniated disks in my lumbar spine and I felt vibrations shooting up through my back if I so much as got in an elevator. She responded with, “There are a wide variety of flats available.” Because flats are known for being such supportive footwear. When you can’t tolerate anything but a super-cushiony running shoe with arch support, a cute little flat is not going to cut it.

She kept it up for many appointments. She really believed I would get my mystery illness diagnosed if only I dressed like I was going to a job interview. So I was supposed to not look sick in order to find out why I WAS sick. She herself looked vaguely like an aging Barbie doll. I guess her designer suits and heels worked for her. In the end I got my Lyme diagnosis while wearing jeans and sneakers.

Nowadays I don’t hear that many ”you don’t look sicks”—over the years I’ve found practitioners who don’t say things like that. Also, the main ”you don’t look sick” offender in my life was my Passive-Aggressive Illness-Dismissing Aunt, and she finally left this world at age 96-ish. I think meanness kept her alive. Various iterations of this aunt seem to show up in a lot of the cartoons I draw. Here she is in a cover image for a blog post.

Relative tells me to try aspirin

She was really into recommending aspirin, but I later found out she was addicted to Percocet. It was a family secret until my cousin spilled the beans.

I recently realized there are some people (not Mean Aunts) who tell you that you don’t look sick because they have the misguided notion that they’re giving you a compliment. They don’t see that they’re invalidating you. They think they are saying, ”Wow, you have all these health problems, but you still manage to look nice.” I don’t know know to respond to them. I sort of nod and change the subject.

Have you gotten the dreaded ”you don’t look sick? What have some of your experiences been like?

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Hi! I'm Vicki. My blog is called "Miss Diagnoses" because I have too many diagnoses and because my Lyme disease was misdiagnosed for many years. In addition to being a professional patient, I'm a compulsive reader and doodler. Sadly, my writing and drawing are limited by repetitive strain injury and neuropathy. I use assistive technology, but I can't post as often as I'd like. You can also find me on Facebook, Twitter, Pinterest, Instagram, and I have two short cartoon videos on YouTube. Twitter and Instagram: @miss_diagnoses Facebook, Pinterest, YouTube: @MissDiagnoses

5 thoughts on “Things Not to Say To People With Invisible Illnesses, Part One

  1. Fantastic post again.
    Oh the business suit! I haven’t been told this myself, but I had a discussion one day on a pain group about it. A woman said that people should get their hair done, makeup on and dress as though they’re going for a job interview to get the best from their doctors. Hmm…no, I’m going to the doctor because I need their help. I’m not going for a job interview. So I aim for comfort skechers and comfy clothes. Actually, I imagine my GP would tell me off if I wore heels.

    I’ve actually got a draft blog post about the ‘you don’t look sick’ comment. I’ll get around to publishing it one day. Sometimes it’s said, as you have written, as a kind of compliment. I just accept that and say thank you when that happens because I don’t want to look how I feel. But most of the time, it’s said in a not so nice way.

    Liked by 2 people

    1. I would love to read your “You Don’t Look Sick” post! Wow, I thought it was just my ex-psychologist who had that crazy view about dressing for a job interview to go to the doctor—scary that it is a widespread view! I’m glad you have a GP who doesn’t want you to wear heels. I agree—most of the time “you don’t look sick” is meant in a rude way. Ugh…

      Liked by 1 person

  2. […] If you’re just starting AIP and are wondering what to eat, I really love the Autoimmune Paleo Cookbook by Mickey Trescott. The Alternative Autoimmune Cookbook by Angie Alt is also good. If you really like Asian food and don’t have to eat very low-histamine, I recommend Paleo Takeout by Russ Crandall; you can go to the author’s blog to see modifications for AIP. I haven’t found a low-histamine cookbook I love yet, but Claire from Through the Fibro Fog has created many brilliant low-histamine recipes. I can’t develop a recipe to save my life, but am addicted to collecting recipes and putting them on this Pinterest recipe board. And if anyone knows a low-histamine way to make spaghetti squash more appetizing and less wormy, please let me know. Please check out the first post in this series. […]


  3. Yup. Not only do I not look sick but in fact, TOLD I’m not sick, just need to get a job and all my problems will go away cuz I did this all to myself. Damn, caught. This was my true goal in life to lose everything, including my mind, all so I could be the best martyr in the world, check. But alas, I am wrong. Wrong, wrong, wrong…wrong-wrong. Auntie and her disciples will “be right” all the way to their grave. So poof be gone. What do I need to talk to them for anyway? I mean yes, they’re soooo much more intelligent about life than I could ever possibly be ;/ and I’m just not willing to learn, the total loser of the family I have to admit. So what’s my plan? Hmmm….to tell my Auntie her COPD isn’t real, she needs to stop faking it and get a job, quit complaining about how she can’t breathe, she’s just doing it to herself. Running around the block once a day would absolutely cure her, geez, everybody knows that! In fact, all of them need to quit complaining about their fake symptoms and woe-is-me I need surgery, I’m in pain… blah blah blah.

    Liked by 1 person

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