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Transcript of Episode 29: It’s Been a Rough Month–Experiencing Fatphobia in Medical Care

(Ash)

Hello! Welcome to the Fat Lip, the podcast for fat people, about fat people. I am your fat host Ash, and today I wanted to talk about a recent—very recent—experience with the healthcare system. So, I’ve had a rough couple of weeks—actually, a rough month—and this is probably going to be more personal and revelatory than I prefer to be—certainly more personal than I am really comfortable with—but I feel like it’s important to talk about this stuff when it happens and to acknowledge that we still have so far to go.

Full disclosure before we start: I’m going to be talking about medical stuff and doctors and the suggestion of weight loss surgery. If that is something that bothers you or that is going to hurt you to hear about, you should pass this one by.

Okay, so. I moved to a new state at the beginning of October. October 2 officially. Prior to that I had been on visitor status in Canada staying with my partner for a little while. So when I came back to the states, I did not have health insurance. As soon as I got here and got settled, I signed up through the ACA exchange—thankfully that’s still even an option—and got a plan with the soonest possible effective date—November 1. Which is great. Except a couple of days later, I found myself in the position of needing care.

So what happened was that I was out at the movies with my partner, and out of nowhere got a fever and chills. I felt so bad that we had to leave shortly before the movie was over, and I shivered the entire way home in the car. I knew something was going on, but I had no other symptoms at this point, so when we got home I bundled up, took some advil, and eventually my fever broke. I went to bed that night and woke up the next day feeling fine—no more fever or chills—but my right thigh was very red and tender. I’ve mentioned cellulitis before—it’s an inflammation of the skin that usually indicates some kind of infection. I’ve had it before, and I know the symptoms—tenderness, swelling, redness of the skin—and I immediately knew that that’s what this was. And I knew that it absolutely needed antibiotic treatment—it doesn’t go away on its own and can be very dangerous if left untreated.

But I also knew that I didn’t have insurance for 4 more weeks. My case seemed pretty mild at that point, so I used a Telehealth app to speak to a doctor and I got a prescription antibiotic. Now I should note here that antibiotics are very difficult for me because I have some sort of mysterious hypersensitivity to a lot of them. I have this delayed reaction that causes me to break out in an all-over itchy red rash after being on certain families of drugs for several days. And the thing is that I’m not entirely sure what is going to cause this reaction and what won’t at this point and also many doctors believe that the benefits of the drugs outweigh the adverse reaction and prescribe them to me anyway. So I went into this whole thing knowing that I could potentially end up covered in itchy bumps in a week, but I knew that I had to have antibiotics.

So, for a week I was on this drug at home and my leg steadily improved—I had literally drawn a line in sharpie at the edge of the big red splotch and I could see that that redness was receding—but when the course of antibiotics was over, my leg was still sore and red in some areas. I knew that the cellulitis wasn’t healed. Also at this point I had developed a little blister on my thigh. That’s totally normal when the skin is so inflamed for several days, so I wasn’t too concerned, but I knew that my leg was still too tender to be off antibiotics entirely. I knew I had to go in and see someone.

And I was honestly freaked the fuck out by the thought. I am entirely aware of my rights in healthcare, and I know how to advocate for myself, but doctors still make me so anxious. I mean, no one relishes putting themselves in a position where they know someone’s going to frown at them a lot, and I suspected that frowning would be the least of it. But I also knew that this was not something that I could take lightly. As I said, untreated cellulitis is very very dangerous.

So, after having a one full on crying panic attack in my car and also nearly talking myself out of going because the parking situation was awful, I took my anxious self to the ER. And I packed my backpack with my laptop and a change of clothes because I highly suspected that they were going to admit me. Also, as I walked into the ER I noticed that that familiar red drug rash that I mentioned had started to develop on my forearms. Great.

When I checked in I explained my insurance situation—that I had enrolled as soon as I moved to the state, how my effective date was November 1, and how I very unluckily got sick in the meantime. A hospital finance worker made sure to inform me at this point that I’d be financially responsible for my treatment. It was ominous, but I didn’t have a choice, did I?

So I have to say that nearly every nurse I had throughout this experience was incredibly friendly and kind. In the ER, all of the nurses were efficient and talkative and made me feel right at ease. The first doctor I saw in the ER was also totally helpful and kind. She called in a second doctor, though, a wound specialist. He was the first one who made me feel really uncomfortable.

First of all, when he walked in, before even glancing at my leg, he asked who I lived with. I was confused by the question or its relevance, but I told him that I lived alone, and he looked shocked. Then he asked “You can walk?!” And I said yes. And he said “And you work?” And I said yes. And he said “And you can drive?!” And I said yes, I drove myself to the ER today. And he said “Oh, that’s so good. I’m so surprised.”

I was really bothered by this whole thing. Yes, I am a very fat person who can do all of these things, and it’s so fucking annoying that he’d see me laying in an ER bed and assume from my size that I’m homebound or bedbound. But also, the ableism in his inquiries was just so vile. Because I can walk and work and live by myself, he so generously offered me some level of approval? Even though he can’t really believe it? And what would his reaction had been if I’d answered that I can’t drive or that I don’t work? I can’t even imagine how he would have reacted or how that reaction would have felt, especially when I already felt so vulnerable.

He went on to examine my leg and to comment on my lymphedema. He asked why I hadn’t had weight loss surgery—“Why haven’t you had the stomach surgery? You don’t want it? It’s not important to you to be healthy?” He told me that these infections were going to keep happening to me. He told me that if I lost half of my weight it would be better.

And damn, I know how to advocate for myself. I know that there’s no cure for lymphedema, only treatment. I know that weight loss surgery can and does introduce a whole host of other problems. I know how to say these things to doctors. But when you’re sick and a doctor is standing over you staring and poking at your inner thigh, it’s really fucking hard to speak up for yourself. I don’t know what I said—something about not wanting to have surgery. Something about wraps and lymph massage. Thankfully it was a busy hospital so he didn’t have time to dwell on eliminating half of me before he moved on to another curtain.

I was shaken, though. This was exactly the doctor that I’d been afraid of when I was crying in my car. Then, to my horror, this guy told me that he wanted to cut into my thigh to see if he could get a culture of the bacteria that was causing this infection. Now, as I said I have lymphedema which means that I have a build up of lymph fluid in my legs due to damaged drainage. This fluid is rich in protein which bacteria love, so any tiny scratch or sore can be a big problem. The idea of this guy actually slicing into my leg was terrifying, but I didn’t really feel empowered to argue in that moment, so I let him. And it was probably a good decision and the right thing to do—he was the doctor and certainly knew more than I did about it—but what I really needed to hear was how this was going to help me in the long run. He didn’t bother to explain.

And, to make matters worse, the original ER doctor came in to tell me that this doctor, the one who couldn’t believe I can drive but who still thinks I need my digestive system dismantled, would be handling my case from then on since I had a wound now. That he created.

Then I was told that I was being admitted and a room was being made ready for me upstairs. I wasn’t surprised about that part. As I said, I had packed a bag. But the thought of encountering this guy again—potentially multiple times—made me want to barf. I knew I needed to stay, though. I knew I needed antibiotics.

They put me on a strong IV antibiotic there in the ER while I waited for a room upstairs. I ended up waiting for over 6 hours.

Side note here: I’m real tired of the argument against universal healthcare or medicare for all being about how long we’d have to wait to see doctors or how long we’d have to sit in ERs. We fucking wait now. We wait weeks to see doctors all the time. I was in the ER for 6 hours. 6 hours that I will be billed for, by the way. Have I mentioned the no insurance yet part? At least if I were waiting 6 hours in Canada or the UK I wouldn’t be faced with thousands of dollars in billing for the privilege.

By the time I got upstairs, I was in full blown drug rash. I looked like I had a sunburn across my arms and torso that was slowly creeping onto my legs. The person I saw when I got to my room was a Nurse Practitioner, and she was truly wonderful. She made me feel comfortable and at ease—told me that they’d get me on the good antibiotics and I’d be home in no time. She saw my drug rash and immediately ordered me an IV steroid, and she said that another doctor would be in to see me and to order my next round of IV antibiotics. I saw several other nurses and aids that night who were all very kind to me, but I never saw that other doctor. And it turns out that I wouldn’t for more than a day later, which meant I was without any antibiotics for over 24 hours.

I was really mad at that point. All I wanted was to get the treatment I needed as quickly as possible so I could get out as quickly as possible, and here I was just sitting in a hot plastic bed. I could have thought of a hundred better ways to spend a day than eating terrible hospital food and watching TLC, and I was really frustrated that nothing was happening. I asked every time the nurse came in, but they knew nothing and there were no orders, so I just had to wait.

Finally the doctor I was waiting for came in—a specialist in infections—and his utter disgust for me was visible from the moment he walked in. He wouldn’t even look at me directly, and when I spoke to him he seemed completely uninterested in hearing my voice. He frowned and grumbled through examining my leg, told me that I was going to need a very strong dose of antibiotics because of my weight, and then left the room without any further discussion. And then it still took 4 more hours before I got my first round of IV antibiotics.

The next day I had the extreme displeasure of seeing the wound care doctor again—the one who was amazed that I could drive—so he could examine the cut he’d made and see how it was healing. He was actually amazed to see that it was already closed just two days later and made sure to note to the nurse who was assisting him that he was really good at his job. I just tried really hard not to roll my eyes. Then while he was re-bandaging me he started talking again about weight loss surgery. Actually, the first thing he said was “So what are we really going to do about your weight?” I had coached myself on a response because I knew this line of questioning was coming, so I said “Well I would really just like to focus on the problem in front of us right now and then as soon as I can see a PCP I want to work on compression treatment and massage for my lymphedema.”

He just pretended like he didn’t hear me and went on to talk about the amazing results he had seen from weight loss surgery. He said “You know, with a case like yours, you’re young so you can lose maybe 400 pounds or more and then you come to me and I take the extra skin away for you. You’d look great.”

And that’s the moment I stopped being afraid of this guy. Because clearly what he cared about was not my actual health or my lymphedema but what I could look like if I lost 400 pounds. Like he didn’t even pretend that there was any medical basis for this recommendation—just that he thought I’d look better.

On my last day in the hospital, I saw one last doctor that I hadn’t met before. He was there to order my discharge, but before he left, he said “Has anyone ever offered weight loss surgery to you?” I actually laughed. Yeah, of course they have. Nearly every doctor I’ve seen in the last 10 years has. I said yes, but that I didn’t want it. I was out of diplomatic, apologetic answers at this point. And, with a grace that I’ve rarely heard from a doctor, he said “Okay, that’s your choice.” And left it at that. And it’s so sad that that’s all I ever wanted! I don’t need doctors to agree with me or to see it my way. I just want them to acknowledge that I’m the one who gets to make the decision and to respect it. That was the doctor I wish I’d seen all along.

I was in the hospital for 3 1/2 days total, and I was frustrated and in the dark about my care the entire time. The nurses did their best, but when I was discharged I still didn’t know what the result of the culture the dude took was or whether taking a scalpel to my leg had proven beneficial in any way.

I was sent home with an antibiotic that I’d never taken before and the standard steroid taper that should have kept my drug reaction at bay. It didn’t. Turns out that I’m allergic to this new antibiotic also, so I am currently tomato red and itchy all over and pretty miserable. I also came home with a cold, to add insult to injury. But I’d rather be itchy and miserable at home than sweating in a plastic bed, being treated by doctors who, at best, tell me how much better I’d look if I had my digestive system rerouted and at worst are visibly disgusted by me, and paying thousands upon thousands of dollars for the experience. I’m happy to say that my cellulitis is healed and that once this drug reaction goes away I’ll be just fine.

This whole experience has made me think about medical advocacy, though. It’s no wonder that fat people sign up for dangerous surgery so readily. Doctors should not be throwing around recommendations for major procedures that reroute entire organ systems so readily, and certainly not without seriously studying a patient’s medical history and actual needs first. As a society we’re taught to trust doctors and to believe that they have our best interests in mind, but it’s also important to realize that doctors are also people who have the same biases and social conditioning about bodies that the rest of the world does.

It’s outrageous that a doctor would walk into a fat person’s room and immediately suggest gastric bypass before ever examining them. But it happened to me. And I’m willing to bet that it’s happened to some of you, too. And I honestly don’t know how to fight back other than to tell other fat people about it. I think the best we can do is be ready for this kind of thing and to prepare ourselves to argue if we need to. I think we need to talk about this when it happens. I was scared and vulnerable and didn’t feel like I had a voice, but doing this work and talking to other fat people kept me strong and reminded me that I get to decide what happens to my body. I only wish more doctors respected that.

Thank you as always to Starcrusher for the music you heard in today’s episode. Hear more at cstarcrusher.bandcamp.com

And thank you to our Patreon patrons. The Patreon patron of the day is Rosie. Thank you so much Rosie for your support. It means the world.

Don’t forget to follow The Fat Lip on social media! You can find links to all of our social media at thefatlip.com right up at the top.

And lastly I’d like to apologize for the delay of this episode. As I said, it’s been quite a month, but I’m happy to say we’ll be back on schedule by the end of October.

Thanks for listening!