PCOS isn’t a real disease, it’s made up by fat women.

Susanne writes:

From 1999-2001 I was suddenly health insured again and although I was living about 150 mi away from the specialists I eventually needed to see, I decided to have a thorough checkup. I am significantly overweight and qualify as morbidly obese; strangely, most doctors observe, I don’t seem to have the expected health problems from it, but for various reasons I wouldn’t mind losing about half of my body weight, which would still make me overweight, but not as much. I’d like to be able to buy clothing in a local clothing store, and I guess I admit I’d like people not to stare at me on the street. Three different diets didn’t help much (20 pounds off), and the exercise typically recommended for people in my situation didn’t seem to impact me much, either. The results of that push to get treated were, after many trips back and forth, a doctor supervised diet and exercise plan, a lot of tests, a few procedures, a preliminary diagnosis of PCOS. Just as I was ready to start treatment for that, I had to change jobs and move about 1,000 miles away to a different city. When I changed jobs, I had a six month exclusion of treatment on my new policy for anything that was a pre-existing condition. After the six months were over, I went to a gynecological practice that was recommended univocally by a number of my new female colleagues. I was lucky enough to have doctors in the first city who gave me a copy of all the test results and treatment attempts, and I took this file of paper along with me expecting to pick up where I had left off. I have never been so humiliated. A robe that covered a third of my body, a nurse who addressed me by my first name in a town and culture where the usual form of address is Ms or Mrs., insulted me by telling me straight out that my stomach is disgusting, and then read my blood pressure four times because she didn’t believe anyone at my weight could have a bp of 120/90, and a gynecologist who took one look at me, and even before doing the basic gynecological check, started a checklist of new procedures she wished to perform on me because something was wrong (as I stated that I had irregular, weird periods). “I am going to give a prescription to start your period immediately, you should probably go on birth control, you will have to have an immediate biopsy, and let’s see, we’ll start with thyroid”…and my reply was “actually, I have been through a lot of this already, my most recent result for thyroid problems was negative” and she said “how do you know that?” and I pulled out my folder of two years of testing. I said, “you may want to look at these. My last doctor had just arrived at a diagnosis of PCOS when I had to move.” The reply? “PCOS isn’t a real disease, it’s been made up by fat women.” I said, “I just had a biopsy about eight months ago,” and she said, “we can’t trust the results of those tests. If they told you you have PCOS they are quacks and are not interpreting the results correctly. You need to do what I say.” I said, “you know, I am not three years old. I have been reading medical materials since this diagnosis showed up on the horizon, and I think PCOS is a pretty well accepted phenomenon, you can question whether I have it, but I don’t think you can question whether there is such a thing as PCOS” and she said, “why are you reading medical materials? You can’t possible understand them,” and I said, “I have a Ph.D. I may not understand everything, but I am capable of understanding a lot” and she said, “well, you are NOT a doctor.” Realizing we weren’t going anywhere, I said, “can we complete the physical exam?” There was some issue with how the speculum was angled (she didn’t seem very experienced in performing the procedure) and she said, “stop bearing down!” and I said, “I am not bearing down” and she said, “well, who would have thought your vaginal muscles would be so strong. You can’t be having much sex.” (Note: I had indicated on the form that I am sexually active with my partner. I guess she didn’t believe anyone as disgusting as me could be telling the truth.) I thought this wasbeyond the pale and I said, “would you please complete the exam?” I left the office shaking.

Two days later the practice nurse called back to schedule all of the tests that this doctor had ordered. I said, “I will not be scheduling tests with your practice, after my insulting experiences in your practice, I am not sure that you or the doctor is competent” and she said, “you just can’t stand it that someone is finally telling you the truth about your weight.” And I said, “no one knows the truth about my weight better than me. I am the one who lives in my body, thank you very much.”

Thank you to the doctors in the first city who didn’t assume I was just a lazy pig. I stood up for myself with this new practice, but I doubt it had any effect on them. And I haven’t been to a doctor since then. I wish I could get the courage to find another gynecologist, but I can’t risk this kind of treatment again. It made me feel suicidal for weeks. I am pretty sure I had cyst rupture last week. I know I should find a new doctor. But I am at a crucial point in my work and I can’t risk the emotional disequilibrium. I am shaking just writing this.

Welcome WFPL listeners

Welcome listeners of Louisville-based radio station WFPL 89.3.  If you’re accessing this site in response  to the State of Affairs segment today on fat acceptance and weight-based discrimination, here’s an introduction.  The site was conceived after a blogger wrote a three-part special entitled Fat Hatred Kills.  The response to Thorn’s poignant story was an onslaught of similar stories of weight-based discrimination in health care.  This site strives to provide an outlet for people to share their experiences with hopes the stories will prove to be self-empowering and work to change the discriminatory landscape prevalent in too many doctor’s offices and hospitals.

The stories here are heartbreaking in their brutal honesty: Scores of fat people denied adequate and competent health care from medical professionals who couldn’t see past their fat to diagnose and treat the problem.  This is, in fact, one of the primary reasons why more fat people don’t go to the doctor until, in some cases, it’s too late – they don’t want to be bullied by those who’ve taken an oath to “First, Do No Harm.”

This site was borne as a way for people to speak out about the discriminatory treatment they’ve received.  If you’ve been the victim of fat-discrimination in health care, find out how to lodge a complaint here or send us your story here.   You are not alone.