19 Parts of Weight Fluctuations and Chronic Illness No One Talks About

Thanks to fluctuating symptoms, pain, medications and surgeries, chronic illness can alter your appearance in subtle and larger ways — and one of the most emotionally-charged changes you may experience is gaining or losing weight. In a world where people often assume you’re healthier at certain sizes than others, that can create some frustration among chronically ill people. You might be coming out of a flare and having a great day when everyone around you is telling you they’re “concerned” about your weight, or you might feel terrible and still be getting “you look great!” comments. The fact is, weight doesn’t always correlate with improvements or setbacks in your illness, and you are still beautiful at any size. And yet, biases towards certain body types might unfairly try to convince you otherwise.

We wanted to open up a conversation around weight fluctuations and chronic illness, and reveal what usually isn’t said when it comes to weight when you’re battling an illness. Our Mighty community shared the hidden truths about weight and chronic illness that aren’t often talked about. Hopefully these warriors can help remind people with and without chronic illness that no one should be judged for their weight, and everyone deserves to feel beautiful in their own skin.

Here’s what our Mighty community shared with us:

1. “[Something no one talks about is] the fact that some medical conditions and some medications make it very easy to gain weight and almost impossible to lose it again. It’s not a choice, it’s not laziness or greed or gluttony or bad habits. It’s a side effect!” — Michelle M.
2. “I wish that people understood my weight did not cause my health issues. I did not get sick because I gained weight and my conditions will not go away if I lose weight. The constant insinuation from other people like doctors, family and strangers that my symptoms are because of my weight is extremely overwhelming.” — Hannah G.
3. “Losing weight doesn’t make everyone happy! For all of my adult life I have been ‘plus size,’ it took me awhile but I came to love myself and my body! Randomly for no reason (that I can pinpoint) I have lost weight. I know I had gotten to my biggest ever and some weight loss needed to happen, but I hope it stops soon. I don’t want to be small, I don’t want to be thin, I just want to be me!” — Priscilla G.
4. “I am restricted from exercise in all forms, due to a lengthy chronic life-threatening health issues. Autoimmune diseases can do what they want. The diseases… are smart as a tack. They can swell me up, mess with whatever organ they choose, there is no cure. I never turn my back on them.” — KellyAnn P.
5. “When you’re heavier, doctors tell you to lose weight to feel better. You randomly lose [weight] over the course of a few months without even trying, they act like everything is fine. You’ve lost the weight, but you still feel like crap.” — Vanessa B.
6. “[No one talks about] the stretch marks that come with the sudden weight loss/gain. I expected stretch marks with pregnancy, but when you rapidly lose and gain weight in short periods of time because of medications and other health issues, they just pop up out of nowhere. Then you have to deal with feeling self-conscious, not only about your weight, but now with how your skin looks.” — Bonnie P.
7. “Weight loss is terrifying. Every person I saw either said ‘You look great!’ or congratulated me despite having started at a healthy weight already. It’s like a smack in the face; congrats on fearing for your life due to unknown, uncontrollable weight loss!” — Maria K.
8. “When people comment about how thin I am or make comments about how I should eat, they don’t take into account that I’ve lost weight because eating makes me feel like my body is at war with the food. When I look thin I’m feeling really bad physically and sometimes mentally.” — Kelly Ann G.
9. “I am astoundingly kind of happy that I am fat and ‘broken.’ I know there is a cognitive dissonance in that sentence, but that doesn’t make it less true. Being fat and disabled has made me a better person, a more compassionate human being, and has sparked my determination to live my best life.” — Darcey R.
10. “With a disease that makes me basically starve, I can still gain weight. I often gain a ton of weight right after a flare because my body thinks it’s still starving and needs to store as much as possible.” — Marissa J.
11. “I wish people wouldn’t comment in general. It is none of their business. When your weight fluctuates drastically it isn’t fun… There does not seem to be a middle ground with these diseases and it is difficult to be comfortable in your own skin when you never know which way things are going. The constant fight is so exhausting. We battle in ways others can’t begin to understand. I love my family and friends no matter their size. Their health and happiness are my only priority.” — Leah C.
12. “I honestly hate the ‘You’ve lost a lot of weight. You look good’ comments. Or my family just assuming I’m not eating and that’s why I’m so skinny. What I eat, my body attacks, and it all goes right through me. Not much I can do about that! Or when I go out and people keep asking me to have a drink and I tell them I can’t because it’ll make me sick and they follow up with ‘Oh we all get hangovers, just have a few with us.’ Like seriously? No, it’s not a hangover, my body attacks itself and alcohol makes it so much worse.” — Katie S.
13. “I have to keep three different sizes of clothing at all times. I never know when my weight will radically fluctuate up or down. When it’s down, I hate it when you tell me to ‘eat a cheeseburger.’ It makes me want to skip the nausea meds and throw up on your shoes.” — Becca B.
14. “There are a lack of plus-size clothes or the clothes they do have are meant for older women — not a 23-year-old.” — Christina S.
15. “I wish people realized there are two legitimate ends of the spectrum when it comes to weight issues. I had a lot of weight loss with my myriad of diseases – it was not intentional, not a good thing, certainly not an enviable thing. It was painful, exhausting, and worrying. So please never tell someone ‘consider yourself lucky’ or ‘I wish I had that problem,’ as though it isn’t a real problem. It is a very real problem.” — Jensha B.
16. “You very often have no control over your weight, regardless of diet and exercise. People go from making comments that you are too heavy, and your weight is causing your health issues, to you are too thin, and they are concerned you are not eating enough, but what they don’t realize is, you are not doing anything differently! It is often very difficult to emotionally deal with.” — Angela B.
17. “Please don’t say ‘I wish I was on your diet.’ No, you really don’t. I would gladly have the weight back and be healthy.” — Jamie M.
18. “I wish people just wouldn’t comment on my weight at all. I take multiple medications that affect my weight and I’m unable to exercise. I wish people would just acknowledge that I’m doing my best and that my worth as a person isn’t tied up in my weight or my appearance. My health is so much more important than my dress size.” — Ariel N.
19. “I’ve decided to love and embrace my body. Over the last week, I bought new clothes that fit. When I wear them, I feel cute! But more importantly, I feel enthusiastic about getting dressed because the outfits are comfortable and just my size. When it feels difficult to love my cushingoid cheeks, swollen neck and protruding stomach… I’m daring to love all of me. Even when I feel judged and misunderstood, I’m daring to give myself the love I used to crave from others.” — Heather T.