Why are so many doctors so comfortable being dismissive of autoimmune patients?

I’m sure I’ll woosah and feel better later, but I just got super rage-y after I messaged my hematologist. Not because of her response, but because of what I anticipate her response will be lmao. I’m preemptively pissed. Which sounds ridiculous if you’ve never dealt with a chronic health condition in the United States, but it feels totally reasonable to me right now.

That ^ is the gist of my complaint. Here are the probably too long specifics: I have been seeing hematology a couple of times a year since summer 2024 for iron infusions. In this timeframe, I’ve never actually been anemic, but severely iron deficient and very symptomatic. I was not absorbing or tolerating oral iron, and I’ve had to come back for infusions multiple times now. I think, based on MY research (not theirs, because they apparently don’t give a flying fuck if you are not actively dying in their exam room) I think that my near constant state of varying inflammation levels is eating up my iron. At my first hematologist’s office, I got one round of infusions with a (mostly helpful) hematologist that retired shortly after. I was told to come back if I needed iron and that another MD in their practice would take care of me. I called their office when my ferritin dropped to an 18 and TSAT was around 18. Their office said they were going to schedule me not just for an appointment but an infusion even! I confirmed several times that they had the correct info as I’d never seen this other doctor in the practice, but they confirmed that my insurance had already given prior auth and my previous hematologist had everything noted and taken care of for if I returned with the same issue.

Another little side note- I was extra thankful and relieved for the iron infusion news at the time because I was in the parking lot of my GI doctor, where I had to physically drive to get the results of my supposedly “normal” iron panel. They literally texted my phone saying that my blood work all looked normal. I had to ask for the iron panel at that appointment because I was feeling very symptomatic again. When I asked if they could provide specific values rather than just telling me things were normal, they said I could drive up there or they could mail it lol. Like okay. And not to my surprise, things weren’t normal. My ferritin had dropped from a 50, where it had held for several months, to an 18. Ugh.

Anywho, I was pumped for the infusion because I was supposed to go on my first vacation with my children. We were going to the beach in August, and the ID makes heat intolerance and just movement in general so much worse. I arranged for childcare, a ride, made sure to get my phosphorus checked before hand since it dropped last infusion, packed my snacks and drinks and stuff to keep my comfortable and occupied, etc. I get there and the “new” hematologist who was also getting ready to retire tells me that I’m not deficient and he will not be doing the infusion. He told me that I was the healthiest person in the office. It was so hurtful, because I felt like my autoimmune bullshit was being disregarded because it’s “not as bad as cancer”? I am normally very anxious and just pretend to agree with what the doctors are saying. If I give pushback, it’s so mousy. But I DID fight for myself. And it got me nowhere. He lied and told me that my insurance wouldn’t even cover it. He lied and told me that I wasn’t even scheduled for an infusion. He lied about the criteria for infusions for patients with chronic inflammation. He told me that none of the symptoms I mentioned were even caused by ID and that I should see cardiology (not knowing that I had a failed catheter ablation earlier that year and extensive work up for SVT/IST. I left the office sobbing. And I felt so guilty walking out of an office where they see cancer patients sobbing for being “too healthy”.

After about ten phone calls over the course of the next several weeks, I was able to get in for my infusion. Not in time for my vacation, but it was still a win I guess. I never saw that doctor again before he retired and I was handed off to an actual new doctor. She was so friendly and patient. She told me that she would start seeing me every three months for labs and then infusion if necessary. She wanted to help me correct my iron before I got depleted and symptomatic. I was soooo thankful. Until my next appointment. She told me before my labs even finished coming back that I didn’t need an infusion and to come back in six months. This was based off of my ferritin, which was only elevated recently because of a flare up. I even explained that to her. But instead of demanding that we wait for the TSAT to come back, or check inflammation markers, I walked out of the office with my head down like a sad puppy. When my TSAT came back confirming my suspicions, I messaged her. No word back for about a week, but I’m not urgent like her oncology patients and it was around Christmas time, so no biggie. I message again about three weeks later. Another week goes by….nothing. I put in a phone message for her NP. I have still not heard back to this day.

I saw my third new hematologist on Monday. I know it’s not fair to her to be so hyper and pre-frustrated, but I’m so tired of having to fight for everything. I’m not seeking pain meds. Im seeking answers and compassion. Each year I feel more and more like specialists are learning how to treat you like ER physicians. They’re only going to investigate if your basic CBC and CMP are very abnormal. And if an answer isn’t easy to find, it’s fibromyalgia. Or anxiety. Or both. It’s insane that I have to come up with my own theories, what tests to run to see if I’m correct, and then spend more time, energy, and money that I don’t have driving to and from the doctor’s office only for them to like haggle with you over what they’ll even look into?

Okay I’m done now I think 😂. There is SO much more with each and every specialty I’ve seen, but I think this about covers hematology. I’m so sorry to whoever read all of this pointless bitching. I think I just needed to scream into a pillow, but a Reddit rant will do.