Weight is a frustrating topic with chronic illness. We gain. We lose. It fluctuates randomly. Due to illness. Due to medications. Often we are put on meds that cause a lot of weight gain over years and then told by those same doctors to lose weight. If that isn’t frustrating I don’t know what is. My weight fluctuations are not as dramatic as others, but I was judged on them by others.
This is me at my heaviest 165. Bad pain year. Bad year all around. Depression, unmanaged pain… not a good time.
This is me shortly after I gained back about 5 pounds from my lightest weight recently as an adult at 120. Just having gotten over the extremist and unexplained nausea that lasted about a year and a half.
Skinny never equalled healthy. Overweight was a very bad pain zone for me, but the weight gain was predominately med related. Not as people assume my fault and also the reason I was in so much pain. The spontaneous weight loss was not an indication of improvement, but rather a flare of migraine related nausea reminiscent of when I was in my 20’s. But I was episodic then, so extreme nausea was… temporary, not constant.
My very first weight gain from 120 to 140, was actually hypothyroidism. It was rapid and came with other symptoms but was treated before it got too out of control. My first weight loss, modest, was from treatment of that. Hypothyroidism is one of those things that does make it tricky to lose weight. It can be the cause of a lot of weight gain. One reason for weight gain in the chronically ill can be hormonally related.
When I was at my heaviest I did get a lot of comments on diets I should try for my health… how it would ‘improve’ my fibromyalgia or migraines. Cure them likely I was often told. Why would it I wondered if the Meds are what is Causing the weight gain and even they are not helping?
My second weight loss after all the weight gain from meds was with Topamax… a med. From 165 to around 145. Nothing to do with me or anything I did, but people commented on my ‘improvement’. I did Nothing. Just like weight gain from meds I did Nothing, I certainly did Nothing to lose it. But damn how people thought I had improved due to my appearance. I felt no different, of course. It frankly shocked me how many comments on my ‘improvement’ I got. How many people assumed I was doing ‘better’. And it made me a little angry really. Because better I was not.
The third weight loss was from the nausea from 145- 120. People I knew were worried. One co-worker was concerned. Every other person remarked on how much I had improved and how much better I must feel. As if suddenly I was cured of my ailments by being skinnier. Man, I was so sick. And these comments were just so much of a contrast to how I felt in the inside. All the time with this uncontrollable nausea. Zofran, a lot of Zofran, didn’t touch it. Peppermint tea. Ginger. You name it, I tried it. Ate Gravol like it was going out of style, and that with everything else slightly managed it. The Most nauseated I have ever felt in my entire life. Too no joy in eating. No joy at all. It was freaky weight loss. And I had a lot of tests because of it. But surely I must be BETTER?
We don’t need to ‘Just lose weight’. Sometimes losing weight is the Actual Problem. A sign we are getting worse, not better.
We don’t ‘just need to lose weight’. Sometimes our weight impacts our health in no way at all. Lose or gain migraines were the same for me.
We don’t ‘just need to lose weight’. Some people are a little overweight but are healthy in blood pressure and cholesterol and all those numbers… but still have a chronic illness. Their weight isn’t the factor.
Sometimes we lose weight, like I did from illness, from meds… guess what? Still ill. Still have pain. Still chronically ill. Wasn’t a factor.
Sometimes when we have gained a lot of weight from meds, from illness, it is hard to lose it. Because of the illnesses we have. Because of pain. Because of fatigue. My example is this: exercise for me peak conditions is 20 minutes on a stationary bike maybe 3 times a week. Peak conditions. Pain interferes with that. Migraines interfere with that. And no one is losing weight on the easiest setting 20 minutes 3 times a week. But that IS exercise for me. It is what I am capable of doing. Diets on the other hand can be tricky because of digestive issues. They have to be carefully done, and someone may not lose weight from them, although they may help in other health related areas. Sometimes it is complicated.
The fluctuations of weight with illness and medications is a Constant thing. Just constant. One way. Then the other way. It is a frustration to deal with it. Three sizes in the closet at all times. Just in case. The perceptions though can be pretty astonishing. It would be more profound for people with larger fluctuations than me. But it isn’t the weight itself per se. It is the changes in people’s attitude on my appearance comparatively. It is a massively common stigma to blame someone’s weight… and therefore their lifestyle for their chronic illness. But it just isn’t right. Just like it isn’t right to judge their appearance if they lose weight to suddenly think they are cured. Our appearance isn’t our actual wellbeing with chronic illness.