In November, I visited an allergist at Cincinnati Children’s Hospital. It felt weird, but he had offered to see me after I reached out looking for MCAS-aware doctors in the state. He shared that he saw adults too, so I felt okay going there.
This was the first medical appointment my partner got to come with me to, so I was nervous about that. I wasn’t nervous about this doctor, though… and I should’ve been.
The Appointment
Dr. A was running behind, which I wasn’t too worried about. I’d set up the appointment at essentially the end of the day. I was getting tired, though, which usually brings a decent amount of brain fog with it. Add to that how I hadn’t prepared as thoroughly as I generally do for appointments, and I was off my game.
When Dr. A came in, he did so without really saying hi. That felt weird, but I chalked it up to how long his day had been and tried to shake it off.
That was, until he dug into asking why I think I have Mast Cell Activation Syndrome.
Let’s be clear: MCAS has been the differential diagnosis we’ve been running off of for years to explain my allergies. Tests show up with mixed results, and we know that the tests aren’t great and miss many people – hence treating based on believing this is MCAS. Based on my treatments, reactions, and even my comorbidities, this is the right diagnosis.
He told me things that are categorically false about this condition. He also told me that my reaction to anesthesia during top surgery wasn’t typical of MCAS. Since they didn’t run labs while helping my body to not yeet itself into the great beyond, he wasn’t going to take the views of the medical team who was treating me seriously.
“They still should have run lab tests.”
We wound up with him saying I have chronic hives. It’s a woefully incomplete and inaccurate picture of my condition, especially as it leaves out the various other body systems involved. Then again, I guess I can’t expect much when he didn’t actually ask about any of my symptoms. No general questions about what brought me in or anything along the lines of getting to know who I am.
It was like Dr. A had no bedside manner. To prove it, he began to run the Beighton Score test for Ehlers Danlos Syndrome (EDS) on me without warning me what he was going to do. My joints were incredibly unhappy. We also know that score isn’t accurate for a number of reasons.
After then asking me to hop up onto the exam table, he was absolutely shocked that I was working in public health. He seemed to assume I knew nothing about healthcare at all. Perhaps the appointment would’ve gone better if I had pulled out my degrees and experiences beforehand.
After asking about a possible referral to a POTS specialist if he knew one, I was quizzed on what I do to help with this condition. When I didn’t list exercise, I got the “Well, ya know, POTS is something best treated with exercise” line.
I suppose it was a mistake to even try, but asking him if he was aware whether or not the rheumatologists at CC also saw adult SJIA patients was met with incredulity. “Why in the world would you need to see a pediatric rheumatologist?” Um, IDK, if I went into MAS?
When Dr. A left the room, I turned to look at my partner. We were both completely floored at how I was treated. We talked about just finding a new allergist because I can’t do that again. With the holidays and a change in insurance as I start my new job, that’s been on hold slightly. This week, though, my goal is to try to get an appointment set up with someone closer – and closer to my level.
Unpacking
The whole experience was so frustrating. It felt like Dr. A had already made his mind up about me being a hypochondriac or attention seeker before he even saw me. I’m sure the fact that I am overweight, trans, and still often read as a young person added to the shit sundae I got shoveled into my face.
This visit meant taking the day off of work. We drove three hours one way to see this man. And, again, he offered to see me as opposed to answering my question and despite the fact that I had shared I lived multiple hours away.
That day was on par with a visit I had with an old primary I had in 2012. I’d gone in with that was clearly an abscess. This doctor, full of hubris, told me the abscess was a pimple. He mocked my pain, laughed about me being overdramatic (in his eyes), and then told me to go home and take my biologic. I had to get basic medical care from my at-the-time rheumatology nurse practitioner. She took me seriously and got me patched up.
Moving Forward
I have my first appointment with the new rheumatologist in two weeks. More in line with how I usually am, I spent today preparing forms and writing up my medical history. I’ve already started the process of having to prepare for ruin and heartache, as I should’ve done in November. It’s so frustrating how much more BS we have to go through that the people on the outside don’t recognize.
I have to say, though… To have my partner with me and have witnessed that treatment Dr. A flung my way – to know I’m not gaslighting myself here? That alone has been priceless. As we talked about it today, my partner is coming with me to my rheumatology appointment as well.
I don’t think I’ve ever had someone in my life who has cared that much. It’s so nice to feel like I’m half of a team, instead of dealing with all of this on my own.
