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Kate Schultz's avatar

The "difficult/challenging" patient--that's me. Not necessarily because I'm fat (though I'm sure that's some of it) but because my Ehlers-Danlos Syndrome complicates the algorithmic, protocol based health care system we have. Going through a check list or trying to put me in a box doesn't work because my body doesn't work like others do--which is true of everyone, despite how we're taught. I need someone to be creative and think about my symptoms differently. I had a nurse tell me once that I was difficult to deal with because my condition made me "different." Yeah thanks for reinforcing the same message I get every time I interact with the medical system that wasn't designed for people with chronic and/or complex medical issues.

"Just try it" is also a load of horseshit. Why do medical providers (from doctors to nurses to tech to assistants) think they know our bodies better than we do? Again, not related to being fat, but still as upsetting: I have a higher breast cancer risk due to two maternal aunts having it at young ages. My doctor wants me to get a mammogram, and normally I'd be all about preventive screenings, but I bruise *very* easily. Blood pressure cuffs bruise me. My cats stand on my chest bruise me. I just cut my arm on a small, plastic, blunt Command hook. My skin is tissue paper. I also have small breasts (another fat person issue: being fat doesn't equal big breasts! If anyone has a recommendation about where to find small cup/large band bras, I'll be forever in your debt). I know they have to pull and squish and it just sounds like something that will be painful and harmful. The response I got from radiology: other patients with EDS have gotten mammograms and they've been fine. 🙄 The other thing I get told is to "just try a mammograms and when it starts to hurt, tell them to stop. Then you'll have a failed mammogram and your insurance will cover an MRI." Just try it? Take up an appointment that someone else might need for a procedure I know will harm me, especially when there's another option? No one has spoken with my insurance about what they will or will not cover. And I've told techs, nurses, and even doctors not to do something or to stop and 99% of the time I'm told, "I know it hurts , just hang in there a little longer." Because clearly, they know my body better than I do. 🙄

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jen's avatar

Thank you for this post! I hope providers take it to heart. Here is something that happened to me yesterday:

I was in for my 5th iron infusion (necessary due to poor absorption due to refractive celiac), and the first 4 had been rough because I’m a hard stick. I’ve always been tough— even as a young kid. I do what I can to help (drink lots of water ahead of time, try to keep my always-freezing hands and arms bundled up and warm) but I know I’m a tough patient.

In previous weeks, I tried to direct them to a vein in my forearm that other skilled nurses have been able to hit before. None of these nurses could hit it. It was obvious the way they were pinching my fat and looking at each other that they didn’t get many fat patients. They ended up getting newborn-sized IVs in my hands each week.

Yesterday I came in, and the whole nursing crew looked at each other and sighed. They appeared to be debating who was stuck with me. The nurse who came over said they were all arguing about who would start my IV because “some patients just have a reputation and you’re one of them.” Uh… thanks? I said it was good to know I was memorable but it didn’t inspire confidence to know they were drawing straws to see who would be forced to work with me.

She tried to cover but the damage was done. And the irony of it all? As soon as I showed my arm, the nurse and another nurse 10’ away both exclaimed they could see a fantastic vein in my arm— the one I’d been telling them about all along. And they got the IV in that spot on the first try.

It wasn’t my fatness that was the problem. It was the fact that I had no iron or red blood cells. After a few rounds of iron, I now have visible veins. Go figure.

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