Friday, 25 May 2018

Advocating for Yourself at the Doctor

My family had to switch insurance recently. That meant doing the thing that I hate the most ─ finding a new primary care provider. I dreaded it and stressed over it for months. Then I had my first appointment this week.

I needed to get in quickly to get a particular vaccination, so I took the first available appointment with the first available doctor. He was not one I would have picked for myself, since he specialized in men's health and sports medicine. Ugh ─ my experience is that sports specialists are very biased about people of size. I uneasily anticipated a fight over weight loss, weighing regularly, and lectures about nutrition, dieting, etc. I went in primed for a fight.

I am so happy to report I was totally wrong. Not that we were in total agreement about everything, but he listened very respectfully to my point of view and conceded some arguments. He took a very long time in my appointment, much longer than I expected, in order to get a very complete history, and he was very gentle and caring overall. What a tremendous relief!

To advocate for myself, I brought  the Health At Every Size Information for Providers cards from the blog Dances With Fat. That opened the conversation on a productive note; he appreciated me sharing my concerns so he could address them. The good thing about the cards is that they give a quick summary of Health at Every Size and there are research citations with links to the research. That kind of thing resonates with care providers and shows that HAES is not just about “giving up and letting yourself go” but truly about promoting health. Care providers respond better when they realize that.

Another thing I did was take informational handouts about Lipedema from the Fat Disorders website. Some doctors know about lipedema now, but it's surprising how many do not. And of those who do know about, many have only cursory information. It's very helpful to have a handout with details and research citations about lipedema if this is an issue for you. We had some interesting discussions about lipedema as a result. I think he learned a little bit more about it from me.

I also took in a one-sheet summary of my medical history. It lists all of my care providers (with contact info), any health conditions, all of my medications (with current dosages), and any history of surgery (with the year) etc. I don't have a lot of family medical history because I'm adopted, but what information I do have is very revealing, so that is on the sheet as well. The doctor was very impressed at having such a quick Cliff Note's version of my medical history and was happy I provided it. I highly recommend having a summary like this.

One thing I didn't need to do was question his care recommendations for me. That was so refreshing! He stuck to the issues at hand and didn't automatically recommend weight loss. Nice! When a doctor recommends weight loss and you are not interested, the best question to ask is, If I were thin, what tests and treatment would you recommend and why? Challenge the doctor to see you and treat you like any other patient, without seeing and trying to treat the fatness first.

I didn't do one of the most common things recommended to patients of size ─ bring along an advocate ─ but then I know how to advocate for myself pretty well these days. However, if you have trouble standing up for yourself or just need someone in your corner, I highly recommend taking an advocate to an appointment, either to get better care or just to take notes for you. I have done so in other types of appointments and it was very helpful.

 I think it also helps to look for specialties that tend to be more holistic, like a D.O. instead of an M.D. (both are fully qualified, just from different organizations), or who have a bigger picture of health, like a family doctor instead of an internist. Many practices now have Physician's Assistants and Nurse-Practitioners, and they often are more holistic and understanding than the M.D.s in the practice. Remember that midwives can also do gynecological care; many women of size choose to get their annual pap smears and care from a good nurse-midwife practice instead of an OB.

Never assume size-friendliness from a person's initials and certifications, however. Always ask lots of questions and don't assume that a certain title means size-friendliness. There are many wonderful doctors available and sadly, there are some very fat-phobic nurses and family doctors out there. Start with the least invasive, least high-tech specialty, but do your homework and ask lots of questions before making a final decision about the best care provider for you.

The Tricky Issue of Weighing


One of my main concerns in going to a new doctor was not having to weigh every time I visit. I was fine with getting on the scale for our initial appointment because I believe it's useful for them to have a baseline weight on record. However, I informed the doctor I would refuse to be weighed on repeat visits unless there were a pressing medical need for it (like impending surgery, weight-based dosing of certain drugs, certain conditions like Congestive Heart Failure, etc.).

He agreed that I always had the right of informed refusal, and he listened to my reasons of why I find it so triggering and objectionable. He said the med techs might still ask me each visit because it is so part of their routine, but that he would put in the chart that I should not be harassed or pressured about it (which has happened in the past). After a discussion we came to my usual compromise; I would be free to decline the weighing every visit, with the understanding that if there were large changes in my weight I would report them (because that can be a symptom of a medical problem), and if there was ever a legitimate medical need for weighing I would agree to do it. Weighing itself doesn't bother me, and I don't care what the number on the scale says. For me, it's the act of being weighed in public that is just very triggering and stigmatizing. It's part of my personal empowerment to refuse such unneeded requirements.

I should note that I've written about this before and people noted in the comments that when they refused to be weighed, some med techs told them they did not have the right to refuse, that the insurance companies required it in order for the visit to be paid for. This is baloney. Weighing is like any other test or "measure of health;" you always have the right to informed refusal. If you are firm in your boundaries, most of the time they will back down. I've had some fights over this but have always won because of the right of informed refusal. If all else fails, state strongly, "I DO NOT CONSENT." This has more legal heft because it could potentially lead to being sued. Most of the time they will stop badgering you.

However, according the comments on my previous post, once in a while there is a doctor who will dismiss you from the practice and refuse to provide care if you refuse to weigh at every visit. Even in the face of legitimate protests, some won't back down. All I can do is sympathize and say is you are better off without a provider like that. You have to decide if avoiding weigh-ins is worth it to stay with that particular provider. Generally speaking, a provider that doesn't respect the basic right of informed refusal is not worth having as a care provider anyhow. I would worry what other medical procedures or interventions they might try to bully me into. I would not want to stay with a provider who used such strong-arm tactics. They are not trustworthy. It would be a giant red flag to me.

If you don't have any other choice than to see that provider, do your utmost to challenge the decision. Don't make it easy on them to disregard your rights. Write letters to the practice manager, to the insurance company, to the hospital, etc. If you really do not have a choice, make it clear you are weighing under duress and launch a social media campaign against the practice. Do what you must to get the care that you need, but don't take medical bullying lying down. Even if you don't succeed in getting this rule changed right away, you might with time. At the very least, you put pressure on the doctor and force him to defend why he is disregarding the patient's right to autonomy in their medical decisions.

Concluding Thoughts

Image from Dances with Fat blog, link here
Print this out and take it to your first visit with your provider
Finally, I just wanted to note that sometimes people of size avoid doctors because they are afraid of battles like these, of mistreatment and fat-phobic treatment. I know it's tempting to just avoid the battles altogether, but it's not wise. I would like to urge my readers NOT to avoid going to the doctor. As we age, it really is important that we go see a care provider regularly. It is very important to get regular lab work done to track the results over time, to catch any problems early, and to have a provider with a broad base of knowledge look for issues if needed.

Even though your past contacts with medical providers might be negative, it doesn't mean it will always be that way. You might luck into a truly size-friendly provider, or at least find a size-neutral provider who is willing to discuss things and compromise with you. More and more practices are trying to be open to a more size-neutral approach. There ARE good providers out there.

I learned that this week. I was all ready for a fight, and I was sooo pleasantly surprised that I didn't need one. My intent had been to use this doctor for the purpose of my vaccination, then switch to one of his colleagues, but now I think I'll stick with him. Finding a size-friendly provider can happen. It's best to be ready, just in case, but remember, you might be pleasantly surprised too. 


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