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. 🙄
I have large breasts but SUPER sensitive skin and can’t wear regular bras, so I’ve been ordering custom cotton and latex free bras from Decent Exposures. They’re sports bra style (with or without clasps), but super soft and they’ll custom make literally any size at all.
I had to have a mammogram last year because of a lump, and I was surprised how smoothly it went. I don’t bruise. My breasts are the opposite of dense, so I wondered if it’s harder to do the denser the chest tissue. I had a gentle tech and they can use foam pads to cushion the plates (I didn’t end up needing them). I don’t blame you for avoiding going but just wanted to let you know there is hope and to wish you luck if you decide to try it.
Ugh! Can you ask for an ultrasound instead? I have asked my doc and she has written a prescription for that. I have very large breasts and hate mammograms.
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.
Oh, I am so sorry this happened to you! I hate it when they can't get a vein. I get so anxious! It's their job to make you calm and to help you with this difficult procedure. It's not your job to have great veins! Grrr!
"It's their job to make you calm and to help you with this difficult procedure. It's not your job to have great veins!" 100%! I don't understand why healthcare people feel free to say this shit in front of patients when this REALLY unprofessional behavior in any other business or organization would be completely unthinkable!
Thanks for sharing your observations and reminders! Every time I visit my doctor, somehow or other the story of their latest (failed) diet enters the conversation. I'm never quite sure, since I have stated before that I have no interest in dieting, whether they may be just looking for a sympathetic ear (my first impression) or if they're encouraging me to follow their (failing) lead. Most recently their failed-diet saga related to my request for advice about some foods I can no longer eat. My response was a not quite brilliant: "Ah...." After reading your post, I'm thinking I might just prep a short document with some references to share or print out a relevant tip sheet. Anyone have other ideas?
Hi Deb, That's happened to me to and it's completely wild to me - like, why are you telling me this and then encouraging me to do it? I have printable cards you can take to the doctor, I'm actually publishing them here in the next week if that's helpful.
It's a little crazy, right?! But I've had total strangers tell me things that they really took chances in sharing, so I always hope that some folks just feel comfortable with me. Still, while people-watching at the mall, that kind of admission would open a discussion. In a medical office there's a different atmosphere and power dynamic. The printable cards sound really helpful! I'll watch for the post.
what I appreciate most in this post is the reminder to providers that a fat patient almost certainly has had terrible experience with the medical system. Not just once but multiple times. A fat person who has a great--or even average-- relationship with their doctor or clinic is rare. We've gotten a prescription to diet instead of antibiotics or steroids or joint replacement surgery or medical testing (except for a1c). And when we object to this mistreatment we get labeled "difficult," "noncompliant," and "argumentative."
We have every reason to be!
Providers wanting to build a true rapport with their fat patients have to recognize this. They're not going to get instant trust. It's going to take time and care and gentle treatment.
At the end of January I had the EMTs take me to the ER and I’ve been inpatient ever since - turned out I had a perforated peptic ulcer (w peritonitis) which had adhered to my stomach wall and when I woke up they’d had to slice off the stomach wall and then stitch it back together smaller. not to mention fixing a gallstone and two additional hernias. At least 3 surgeries in 24 hours. Finally beginning to heal and just released from hospital to rehab facility. But I was quite shocked to have unwanted unexpected gastroplasty. Ack!
Felt this one--I'm always blaming myself and constantly worried about the burden I'm causing--even tho I'm sure I'm no more a burden than other patients! Brainwashed by weight stigmatizing healthcare 😒
Thank you, thank you, Ragen! This is a great piece, and very accessible, as well as easily sent to providers as examples of what we are talking about.
I want to recommend a new pod, "Weight For It" with Ronald Young, Jr. and a new Substack writer, Your Fat Guy Friend (the @ is not coming up for some reason) https://yourfatguyfriend.substack.com/
So fantastic to see the men speaking up and hear their unique voices!
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. 🙄
I was once told my body was “weird” 🙄
I have large breasts but SUPER sensitive skin and can’t wear regular bras, so I’ve been ordering custom cotton and latex free bras from Decent Exposures. They’re sports bra style (with or without clasps), but super soft and they’ll custom make literally any size at all.
I had to have a mammogram last year because of a lump, and I was surprised how smoothly it went. I don’t bruise. My breasts are the opposite of dense, so I wondered if it’s harder to do the denser the chest tissue. I had a gentle tech and they can use foam pads to cushion the plates (I didn’t end up needing them). I don’t blame you for avoiding going but just wanted to let you know there is hope and to wish you luck if you decide to try it.
Ugh! Can you ask for an ultrasound instead? I have asked my doc and she has written a prescription for that. I have very large breasts and hate mammograms.
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.
Oh, I am so sorry this happened to you! I hate it when they can't get a vein. I get so anxious! It's their job to make you calm and to help you with this difficult procedure. It's not your job to have great veins! Grrr!
"It's their job to make you calm and to help you with this difficult procedure. It's not your job to have great veins!" 100%! I don't understand why healthcare people feel free to say this shit in front of patients when this REALLY unprofessional behavior in any other business or organization would be completely unthinkable!
Thanks so much— this was super validating.
Thanks for sharing your observations and reminders! Every time I visit my doctor, somehow or other the story of their latest (failed) diet enters the conversation. I'm never quite sure, since I have stated before that I have no interest in dieting, whether they may be just looking for a sympathetic ear (my first impression) or if they're encouraging me to follow their (failing) lead. Most recently their failed-diet saga related to my request for advice about some foods I can no longer eat. My response was a not quite brilliant: "Ah...." After reading your post, I'm thinking I might just prep a short document with some references to share or print out a relevant tip sheet. Anyone have other ideas?
Hi Deb, That's happened to me to and it's completely wild to me - like, why are you telling me this and then encouraging me to do it? I have printable cards you can take to the doctor, I'm actually publishing them here in the next week if that's helpful.
It's a little crazy, right?! But I've had total strangers tell me things that they really took chances in sharing, so I always hope that some folks just feel comfortable with me. Still, while people-watching at the mall, that kind of admission would open a discussion. In a medical office there's a different atmosphere and power dynamic. The printable cards sound really helpful! I'll watch for the post.
what I appreciate most in this post is the reminder to providers that a fat patient almost certainly has had terrible experience with the medical system. Not just once but multiple times. A fat person who has a great--or even average-- relationship with their doctor or clinic is rare. We've gotten a prescription to diet instead of antibiotics or steroids or joint replacement surgery or medical testing (except for a1c). And when we object to this mistreatment we get labeled "difficult," "noncompliant," and "argumentative."
We have every reason to be!
Providers wanting to build a true rapport with their fat patients have to recognize this. They're not going to get instant trust. It's going to take time and care and gentle treatment.
At the end of January I had the EMTs take me to the ER and I’ve been inpatient ever since - turned out I had a perforated peptic ulcer (w peritonitis) which had adhered to my stomach wall and when I woke up they’d had to slice off the stomach wall and then stitch it back together smaller. not to mention fixing a gallstone and two additional hernias. At least 3 surgeries in 24 hours. Finally beginning to heal and just released from hospital to rehab facility. But I was quite shocked to have unwanted unexpected gastroplasty. Ack!
Felt this one--I'm always blaming myself and constantly worried about the burden I'm causing--even tho I'm sure I'm no more a burden than other patients! Brainwashed by weight stigmatizing healthcare 😒
Thank you, thank you, Ragen! This is a great piece, and very accessible, as well as easily sent to providers as examples of what we are talking about.
I want to recommend a new pod, "Weight For It" with Ronald Young, Jr. and a new Substack writer, Your Fat Guy Friend (the @ is not coming up for some reason) https://yourfatguyfriend.substack.com/
So fantastic to see the men speaking up and hear their unique voices!