New pet peeve unlocked

CW: medical gaslighting, weight loss, eating disorders, dieting and related body issues.

New pet peeve unlocked this weekend: Doctors/medical professionals assuming that weight loss is a good thing.
All women will have experiences of medical gaslighting, being told our symptoms are just due to stress/anxiety, age, weight, pregnancy etc. I know women in the low end of the BMI scale who have been told they just need to lose weight, so it shouldn’t surprise anyone to hear about this.

OK, this guy is an acquaintance who has already said things that scream 🚩🚩🚩**red flag**🚩🚩🚩 to me in terms of his ability to treat or diagnose women or chronic illnesses, but he really annoyed me with his assumption that my MASSIVE weight loss (around 30% of my body weight) was deliberate and healthy when he knows I have a illness that makes any kind of physical activity dangerous. I don’t remember his exact phrasing or how the conversation went, but the phrasing and tone of his comments and assumptions, suggested he’d diagnosed me as “Just Fat and Female” in his head.
In my case, yes, it was deliberate, and done with extreme care (dieting and exercise can make ME/CFS worse), but he didn’t ask.
I had even said my health hadn’t been great and he commented something along the lines of at least weight loss was a good thing. I told him that he, of all people, should recognise that such significant weight loss may also be a sign of Very Bad Things.

Chronic illness and weight are not straightforward. In my case, no amount of diet or exercise was going to change my weight unless my body/illness agreed to it. My scale weight has been very consistent (around the 80-84kg mark) for the last 18 years. I had size fluctuations that were about charges in muscle mass, and 1 large stress related scale-weight loss (roughly 10kg), which preceeded the worst and scariest crash I’ve ever had, so gaining that weight back wasn’t exactly bad thing, because it also signaled a return to a healthier state.

For people with Crohn’s disease, IBS, celiac disease, and other digestive issues, weight gain can be a sign of gut health from good management, while weight loss might indicate a decline in health.
Then there’s the whole thing of societal pressures on women’s bodies and our increased risk of Eating Disorders. He doesn’t know if I have a history of disordered eating, so commenting in such a glib way like he did could have been a trigger.
It all happened over less than 30 seconds, but these are all the things that popped into my head even as he was saying it.

Why might weight loss be bad for someone with ME/CFS?

Aside from the fact that any non-deliberate weight loss could indicate health issues, it’s not uncommon for people with ME/CFS to spend so much time in their sympathetic nervous system that their digestive system just shuts down entirely. I know people with ME/CFS who can’t digest solid food and need to be tube fed. They lost weight because they were literally starving until that tube went in.

Even deliberate weight loss can be dangerous for us. Anything that puts more stress on the body has the potential to make us worse. Exercise is often not beneficial and must be done with extreme care to avoid permanent damage. Rapid or extreme changes in diet can stress the body and make it think you have a shortage of food available, which adds to all the adrenalin and cortisol state problems we already face.
In my case, losing weight was a matter of working very carefully with my body, listening for signs that it was willing to give up the safety net of its fat store savings account. When I saw weight fluctuations on the scales after my covid vaccination, I decided to see if I could deliberately change my weight. I changed my diet, with extreme care. I picked food that I knew my body liked, and reduced but didn’t eliminate high calorie foods that might reassure my body or help me manage symptoms (even chocolate and alcohol can be useful tools, used with care). I monitored my symptoms, sleep, exercise, and hydration because I knew that if I pushed anything too hard, my body might freak out and lock me out again. There was also always a risk that this would make me worse, because with me, my calories in have always been my available calories out; less in just means less to spend. It was slow, it was careful, and it’s an ongoing project of learning what my body wants by gaining and keeping its trust. I have maybe 3-5kg left that I would like to lose, but I’m also very happy to stay where I am if that’s what the body wants to do. If my body wants to go back to 84kg, I guess I will have to be happy with that too, but for now we seem to be in agreement that 60ish kg is an OK place to be.

I’d like to get some muscle and strength back and improve my cardio fitness next. That will take a lot more research and careful trial and error. Hopefully it can be done.

No, I haven’t gained significant amounts of energy nor do I feel much better healthwise, but I didn’t really think I would. I do find my primary care team listen to me more when I describe my symptoms and concerns though, so make of that what you will.