learning to be my own advocate

I’m really good at speaking up for others. I’m still learning to speak up for myself. It helps to get super pissed. I was sad and upset at first, and while I still am both of those, I’m really starting to get pissed.

I had an appointment last week with a new ob/gyn. I’ve spoken before about my trepidation around going to the doctor, a concern that I’m afraid many fat people share. I really liked my primary care doc. The ob/gyn I saw? Not so much. I have so many words and emotions rolling through my head right now about how it all went down, and I’m not even sure how to adequately express just how awful it was.

In short, I went in because I’ve been feeling tired lately, and just a little off. I can’t explain it much more than that-  I just felt like something wasn’t right. A friend was diagnosed with polycystic ovarian syndrome (PCOS) and her symptoms sounded similar to mine, so I thought I’d have that conversation with the gyn. I brought it up to her and then it all went to hell.

She didn’t treat me like a person who came to her with questions. She didn’t even treat me like a person. She just went straight into the “it’s because your FAAAAAT omgobesityFAAATZ” spiel and never looked back. I’m not looking to be besties with my doc, she doesn’t need to know my life story and all of my hopes and dreams or anything, but a question here and there, especially during a first visit, isn’t out of the question. In fact, it’s expected.

She didn’t listen to me. When I told her that I knew I’d gained weight the last few months but didn’t want to know the number because I’m trying to focus on a Healthy At Every Size approach to my life, three minutes later she pointed to my weight on the computer screen. Huh, thanks for that.  She also kept extolling the virtues of their nutrition program, pointing out that they have a great team that can help you (nutritionists in a group therapy setting – sweet jesus, no thank you. that may work for other folks, and rock on for them. not for me.).

Her: “It’s expensive but really worth it. I had a patient who lost 100 pounds on it.”
Me: “I’m not interested in losing 100 pounds. As I mentioned before, I’m more interested in keeping my health front and center, not my weight.”
Her: “You need to go on a diet.”
Me: “Diets don’t work; I’ve been dieting almost my entire life.”
Her: “But it depends upon the type of diet. What I’m talking about is healthy foods and exercise.”
Me (in my head after I left and got my bearings again): “Oh my god! You mean I should be eating healthy? Like, fruits and vegetables?? This is brand new information to me! You are CHANGING my LIFE!”
Me (in reality): “…”

It felt like she was tolerating me. Like I was an imposition and she needed to just get me over with and be on her way. Maybe she was having a bad day, but I’m not feeling that magnanimous, quite frankly.

Active listening, lady. Try it sometime. “I hear you and understand that you’re wary of dieting and all that the word implies, but what I’m talking about is …”

So then as we’re finishing up I have to remind her again that I’m interested in learning more about a PCOS diagnosis. I read that one test is a fasting glucose, so I hadn’t eaten just in case she suggested that. She did, so off I went to the lab (after having to find it myself, she didn’t even point me in the right direction), blah blah blood test, moving on.

I got the results the same day and then finally heard from her today. This is when the getting pissed off part starts to really take its shape. She writes (in short), “your blood tests are normal except for low ‘good cholesterol’ and an elevated fasting glucose, which probably means you have diabetes. See your primary care physician.” I freak out and email back, asking if this means PCOS is off the table. Her response, “you probably had PCOS as a pre-diabetic condition. You now have diabetes.” Literally. You. Now. Have. Diabetes. Now I don’t know about you, but getting that news in a one sentence email from a doctor who treated like me like total shit was not the kind of afternoon I had hoped to have.

I email my primary care physician and explain the situation, and bless her heart she responds back in under 10 minutes, saying, essentially, “um, yeah, you’re fine. Make sure to do cardio. We’ll test again in a couple months.”

??????

Ok, so the problems here are hopefully very evident. Namely, perhaps an ob/gyn shouldn’t be diagnosing someone about something that isn’t in their own field house of expertise, so to speak?

Two notes about all of this: 1., it doesn’t matter if I had the most beautiful numbers on the planet, or if my glucose levels were sky-high, we all deserve to be treated with dignity and respect, regardless of our weight OR health. Which are, of course, two different things. And 2., I’m not denying that diet and exercise don’t have implications on our health. And as I’ve said before, I want to feel better, and I know that part of that means moving my body more and paying more attention to what foods I put in it.

Generally, I’m not the kind to share all of my medical-y business in such a public way, but I feel like these kinds of stories need to get told so that when someone else gets treated like an inconvenience, a bother, a non-person, she or he won’t need to feel like the piece of shit I felt like.

Now I’m off to write a strongly-worded email to the doctor and her supervisor.

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33 responses to “learning to be my own advocate

  1. You know, this got me curious and I went onto the Mayo Clinic site. I don’t see anything on PCOS that indicates it’s just one stop on the road to diabetes. Diabetes can be a complication of PCOS, but PCOS is its own malady.

    She’s saying you had it? and what? It magically went away because you (allegedly) developed diabetes? That doesn’t even make sense.

    I’d be ticked.

  2. Ask your primary care doc to refer you to a reproductive endocrinologist — they are the ones who best handle PCOS.

  3. What a shitstorm! I am wary of getting a doc that would treat me like that. I am going in for tests on Thursday and am wondering if I have something going on with me too. We’ll see. I’m glad you are writing to her supervisor.

  4. Geez. Sorry to hear about your horrible experience. Please do make sure that Yuck OB/GYN is told that you are NOT diabetic and that she should remove that from your charts. Having it there could definitely harm you going forward if you need to apply for insurance, etc.

  5. That’s terrible and definitely the kind of news that should at least be delivered on the phone if not in person. I’m sending you cyber hugs!

  6. Oh that woman needs her license to practice medicine revoked.
    If your primary care doctor says not to worry, that you can be retested in a few months, then your fasting blood sugar number was not that high.
    Here’s what the cutoffs are for fasting blood glucose:
    Under 100 — normal
    100-125 — “prediabetes” — people who have numbers in this range are more likely to develop diabetes, but on the other hand, they may never go on to develop diabetes.
    126 or higher — may indicate diabetes — but also might not, depending on what another test says. Diabetes can’t be diagnosed by one test result.

    Another test that can be done is the A1C — and normal is between 4-6 (although a person with diabetes can have an A1C in this range), 6.5 or higher may indicate diabetes. This gives a picture of the blood glucose over the past 3 months.

    As far as PCOS and diabetes goes, here’s my take: women who have PCOS are more likely to develop diabetes, independent of weight. Women who have PCOS are more likely to be “obese” but not all obese women have PCOS, and not all women with PCOS are fat. Some women who are not fat and have PCOS find that eating in a style that emphases protein and de-emphasizes carbohydrates (not low-carb, just a not high-carb) find that it helps them.

    I’m so sorry you had that experience. Let me know if you want more info about diabetes. I’m one of those people who is still fat but has managed diabetes pretty darn well over the past 17 years.

  7. Echoing AcceptanceWoman above, If she really thought you had t2d, the thing to do would have been to send you for a hemoglobin A1c and one more fasting glucose, at the very least, and maybe a glucose tolerance test. Or refer you to an endocrine specialist, especially with your history of PCOS. That’s what they do for THIN people who have elevated fasting glucose. Jeez Louise.

  8. She is a crap dr. and I’m proud of you for handling it the way you did. You’re amazing and I love you!!!

  9. Wow, what an experience and I am sorry for all of your frustration. I don’t want to try to tell you what to do, but I know what I would do. (If you care to hear, read on) I would get at least one (if not a couple) of other opinions just to verify. It would be unsettling for me to hear one thing from one professional and another thing from another. It would be hard for me to decide to believe. Not saying that you have diabetes or that you are choosing to believe the one who told you what you want to hear, but you know the more opinions that agree with each other, the better off, I would feel anyway. I’m sure you are fine though. Thanks for sharing your story.

  10. That’s incredibly unprofessional. You should write her a letter, and write a letter to someone who has authority over her.

    Ashley, her primary care physician would have had a lot more information on her (test results, medical history) than this crazy ob/gyn. It’s completely reasonable and logical to trust her and not the other doctor.

  11. She sounds like a horrible person. She also, to be honest, sounds like someone trying to sell you something. So her clinic offers nutritional guidance that’s a “bit expensive” does it? Sounds nicely profitable. She probably offers it to everyone who comes through her door, regardless of their size. One person will be offered it because they’re fat. Another person will be offered it because of their age. Someone else will be offered it if they’re trying to get pregnant…

    • I hadn’t thought of that…she’s part of a large HMO so I don’t think she’s getting any sort of kickbacks or anything. To me it just felt like the “easy” response for any ‘ol fat person who walked through the door.

  12. I’m sorry you got a lemon for a gyno. A friend of mine has PCOS and one of her doctors told her it would be nearly impossible for her to lose to weight because of it. A descent gyno should have been more concerned with PCOS than with hawking her own weight loss system. I’m trying to work up the courage to go for my first check up in years and working on personal advocacy myself. Kudos on the letter – will you post it here?

    • sending you positive vibes for your check up!!!

      I don’t think I’ll post the letter here, as it will likely include specifics in terms of numbers and such and I’m trying to keep some piece of this process private, but if you want to look at it to help you in your advocacy work, email me and let me know! (thetakingupofspace at gmail)

  13. Seconding all of the support and good information given by other commenters. I’ll also say that, as a woman with PCOS, I’ve had some incredibly frustrating interactions with doctors who should understand the difference between body fat as a SYMPTOM of PCOS and as a CAUSE of PCOS, but clearly didn’t. (“So, you say my fat is a symptom, but if I lose the weight the PCOS will go away? How does that work out, exactly? HUH?”) But even though it’s meant going through too many interactions like yours, now that I have a good GYN and a good PCP, life is much better. If you can afford another visit, try to find another GYN who specializes in PCOS. Google is your friend. Try searching for your city name, “gynecology” and PCOS. And because it’s a syndrome, there are no firm diagnostic rules. Essentially, if you have more of the syndrome’s characteristics than not, you pretty much have it.

    There are some really good online support sites too, though some of them focus an awful lot on weight loss. But if you can let that roll off your back they can be helpful.

    Hang in there! You deserve good care!

  14. This was timely. Onion article: “Patient Referred to Physician Who Specializes in Giving a Sh*t”
    http://www.theonion.com/articles/patient-referred-to-physician-who-specializes-in-g,21255/

    Great quote from it: “Dr. Lewis is really one of the best out there at regarding patients as actual human beings.”

  15. You now have diabetes????

    YOU NOW HAVE DIABETES????

    AAAAAAARRRRGGGHHH!!!!!!!

    A friend of mine just found out the other day that he has type 1 diabetes. He had been in for some tests over a range of time, and suddenly the hospital called him in a “get in here now” kind of way.

    He was in shock. Utter shock. Shaken and horrified and unable to comprehend or imagine what this would mean for his life from now on. The food, the medicine, the behavior, the precautions, the risks, the mortality rates… His world was turned upside down. He was a wreck.

    What the fuck is wrong with this woman? What the fuck is wrong with someone who thinks you can deliver that kind of news like that? Never fucking mind that it wasn’t true!!

    Isn’t there some way to complain about her? She can’t be treating patients like that, she can’t be telling people things that can put them into shock in such a cold, careless, irresponsible and frankly horrifically unprofessional and harmful way!

  16. Jeesh! You know it’s that bad when these supposedly educated people can’t see passed their own prejudices!!! If you ever need fatty back-up, I’d gladly go with you to an appointment. Sometimes just having someone there that you trust is enough to keep your head cool. What a horrible person she is to tell you those things like that. I know people don’t like to complain, but I do hope that you consider doing so about that doc. Ugh! I’m sorry you had to deal with that shit, because it is total shit! You are a human being and should be treated as such and nothing less! ❤
    **Hugs**

  17. None of that stuff precludes PCOS, and despite the word “ovarian,” a gynecologist is not the right doctor to diagnose it. The right doc is an endocrinologist, because PCOS is an ENDOCRINE disorder. So is diabetes, actually.

    And my experience has been that endocrinologists are more accepting than many gynos of fatness, because they have more understanding and awareness that the hormones in our bodies can CAUSE fatness!

  18. Pretty much what everyone else has been saying: that OB/GYN is completely irresponsible and utterly deluded, and needs a good lesson in why treating people like shit is Not Okay.

    My husband has type II diabetes, and it took more than one fasting test to determine that… even at his blood sugar levels! No, really, there are days when he tells me his meter reading or the numbers from another fasting test at the doctor’s office and I just stare at him wondering why he’s not in a diabetic coma. Things are under better control right now, but seriously, I’ve had that thought and even said it out loud. Still took more than one test to determine.

    • from my brief research thus far, it seems like your second paragraph gets to the heart of it…this shit isn’t cut and dried, it’s complicated and it takes…you know, ACTUAL doctoring to figure it out : )

      • Twistie is right. It takes monitoring of fasting glucose levels, and if they indicate something is not right, ONLY a glucose tolerance test will give a definitive reading. A GTT monitors how the pancreas works, where a fasting glucose takes a simple snapshot of blood sugar levels.

  19. I’m angry just reading this. How dare any health CARE professional treat someone like this? This isn’t health care, it’s veterinary care. Seriously.

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