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. 

You Have The Right To Decline To Be Weighed

A while ago there was a discussion over at the blog "Fat Positive Femin[IS]m" about getting weighed at routine doctor appointments. This is one of my hot buttons, so I started commenting, then realized I should probably save it for a post here.

Here's the bottom line: You really can decline to be weighed. You do NOT have to submit to being weighed at every appointment.

I decline being weighed all the time. Sometimes I get hassled for it, but most of the time I don't anymore. I make it clear that this is NOT negotiable. I do keep track of my own weight, informally, at home, but I don't agree to weigh-ins at the doctor's office unless there is a clear, pressing need for it. 

Some people don't have a problem being weighed routinely at the doctor; some do.  Some people weigh themselves regularly at home if they don't at the doctor; some don't. I'm not telling you what you should or should not do; I'm just reminding people that they have a right to decline being weighed at the doctor's if they prefer to avoid it.  This is something that some people of size don't realize.

Your Right To Informed Refusal

As a patient, you have the RIGHT TO DECLINE ANY MEDICAL TEST OR PROCEDURE at any time. It's your body, and you have the final say.

We don't think of weighing as a medical test, but it is a form of one. And you always have the right to informed refusal of a test or medical procedure. So no, you do NOT need to be weighed every time you go to the doctor. It is a test or procedure that you can refuse.

If you do plan to refuse weigh-ins, use strong, clear language when declining; don't be unpleasant, just polite and firm. I usually say something along the way of, "I don't do weigh-ins, thanks" if I'm not anticipating trouble.

If you meet resistance, use stronger language than "I'd rather not" or "I'd prefer not to." That leaves arguing room and sooner or later you'll get arguments. Just state clearly and categorically "I decline to be weighed" or something similar.

If they press it or claim it's necessary, remind them that you have the right to decline any test or procedure at any time and you are declining this one. If they really push (I've had it happen), use legal language, like "I DO NOT CONSENT." Any medical person worth their salt knows that this carries legal heft and that carrying out a procedure on someone after a phrase like this could potentially be construed as assault.

If it gets unpleasant, ask to speak to the office manager, the care provider, or just leave. A letter of complaint afterwards, reminding them of your legal right to informed refusal of any test or procedure, can also help change their tune.

The Power of Complaint

Complaining can be powerful. As I've mentioned before, I once visited an urgent care facility whose large blood pressure cuff was "out for repair." I declined to have my BP taken with a too-small cuff (which can strongly elevate BP readings). Long story short, they manipulated/badgered me into agreeing, the numbers were very high, and I was furious that those inaccurate numbers were now in my medical record.

So I wrote a letter of complaint to the clinic, to my insurance company, and to the head of medicine. I reminded them that I had the right to refuse any medical test or procedure, I included research that showed how much BP can be altered with a too-small cuff, and I quoted the American Heart Association's policy on cuff size. I demanded that they get a working large cuff, that they train their staff on the importance of its use, and that they remind staff of the right of patients to decline testing. Boy, did THAT get results.

So I'm just saying, if this is an important issue to you, feel free to resist being badgered into it. Start by politely refusing to be weighed.  Try to keep things low-key whenever possible.....but if pushed it can be very effective to complain verbally, to ask to see a superior, or even to write a letter afterwards and remind them of your LEGAL RIGHT to informed refusal.

I've had a couple of tussles with med techs who insisted I had to get weighed routinely.  One tried the excuse that the insurance companies were really cracking down and everyone had to be weighed now at every visit.  I noted that they might be trying to encourage that, but it was still my right to decline it. She kept arguing, so I asked whether I was going to need to talk to the office manager.  At that point she backed down, and my nurse-practitioner noted wryly afterwards that no one could ever accuse me of not being able to stand up for myself.  No one in that office bugs me about it now. We do a little dance out of formality; they take me to the scale every time, I politely remind them that I decline to be weighed, and we go on our merry way without any more hassle.

Sometimes, you might find a provider will not keep you as a patient if you decline being weighed.  I haven't found that yet, but I'm sure it could happen.  In that instance, you have to decide if avoiding weigh-ins is worth it or not to stay with that particular provider. Generally speaking, my view is that if they don't recognize that routine weighings are a fairly meaningless measurement and that you always have the right to decline such things, they're not worth having as a care provider anyhow.  I would worry what other medical procedures or interventions they might try to bully me into, and I would not want to stay with a provider who tried such strong-arm tactics.

When Weighing is Appropriate

Most med techs have been matter-of-fact about it when I decline to be weighed, but occasionally one will fight me. I have no doubt that regular weighing is encouraged but the fact is that they cannot "require" it because legally you can always refuse tests or procedures.

That said, sometimes I'll pacify them by telling them that I'd be happy to weigh later in the appointment IF there is something in the appointment that requires an accurate weight. Examples of that might be:

• Certain types of prescription drugs (although most drugs do not use weight-based dosing, some do and an accurate weight would be important for these)
• Before a surgical procedure (anesthesiologists need an accurate weight for anesthesia dosing)
• Prenatal blood tests for birth defects (an accurate weight is very important for these tests)
• If the doctor has reason to be concerned about something like Congestive Heart Failure (weight gain from fluid retention can be a marker for worsening CHF)

These are all legitimate reasons for weighing at certain appointments, and a history of CHF would be a legit reason for weighing on a regular basis.  No doubt there are other reasons that could justify weighing too, but these are the ones that spring to mind most readily.

Sometimes they will tell you they need to track your weight so that if there is a big increase or decrease, they know to look for possible problems like diabetes (which often causes a sudden, unexplained weight loss), etc.  This is an accurate point. As Living ~400 lbs. notes, it certainly is true that a big change in weight can indicate problems, and there are certainly advantages to tracking your weight trends. I'm not opposed to that, and in fact I track my own weight for just that reason. 

However, it's your choice whether you prefer to do that for yourself or have your doctor do that for you.  Personally, I prefer to track my own weight trends and stop being a slave to the medical weigh-ins. I simply reassure my healthcare providers that I am perfectly capable of watching for any alarming patterns myself and that I will report in if there are any concerns.  They know me well enough to know that I care very much about my health and that I really will follow up on it if there is a problem.

Because there may be other situations in which weighing really is important medically, be open to listening to reasons. If it seems reasonable and in your best interests, do it. If you don't mind routine weighings and it's no big deal to you, it's probably easier to just go along with it; there's no law that says that if you are into fat-acceptance you have to decline being weighed.

But think through your feelings so you are making a conscious decision about routine weighing; if it doesn't seem reasonable, if it's just routine and you prefer to keep track on your own, or if you find being weighed triggering or judgmental, feel free to decline it.

Remember, you have the power to refuse or acquiesce.

Conclusion

Weighing every time you go to most doctors is not a requirement. If it bothers you to be weighed, if it's triggering to you, or if you just refuse to be constantly subjected to scale scrutiny, just say no.

Personally, I always agree to be weighed the first time I visit a new care provider, so they have a ballpark figure on record for med dosing or whatever. I think that's a reasonable request.  But after that, I decline to be weighed routinely. Some days it's a battle to have that decision honored, but I don't ever back down.

I do consider circumstances individually; if there is a justifiable reason to get an accurate weight, then I agree to it gracefully and without making it into a big deal.  But only if there's a real reason for it.

I do have a scale at home and I do weigh regularly in order to watch for any alarming trends. I find that just relying on the fit of your clothes is not enough to really monitor your weight trends and that a closer watch than that can be useful, so I do weigh.

However, I don't need to rely on a doctor's office for that; I'm perfectly capable of monitoring my own weight trends. It doesn't take a medical degree to weigh yourself and keep track of those numbers.

I am in a place emotionally where I don't fear seeing the number on the scale....it's more a matter of principle.  I was a slave to the scale for many many years and I lived and died emotionally about what the damn thing said and on the reactions of the people weighing me.  I refuse to go to that place anymore.  I know what I weigh and I don't have a problem with that number, but I don't need to submit that number to public review unless I choose to or there's a compelling medical reason to do so.

Most of the time, it's just routine to weigh people, not truly necessary. And it's ALWAYS your right to accept or decline.

What do you choose to do in your life?  Do you agree to routine weighings at the doctor's office, or do you refuse?  Do you keep track of your weight at home, or do you find simply monitoring the fit of your clothes is enough?  Why do you make these choices?

*Coming Soon:  The Debate Over Routine Weighing During Pregnancy