MCAS & Doctors Disbelieving Patients

This is one of those posts where I try to reconcile what happened at my last doctor’s appointment, which means it is stream of consciousness and I am pretty angry. It was my appointment with an allergist and mast cell/eosinophilic specialist here in Cincinnati. It was my initial consultation with this doctor and while I know him by reputation, I have never met him in person. It takes me several days to come down from these types of appointments because of my medical PTSD. Specialist appointments are often intensive, but for a condition like mast cell activation syndrome, which is especially complex and can include multi-systemic symptoms, these appointments are marathon sessions of questions, examinations and a long list of follow-up tests and procedures that are hard to take when you’re healthy, let alone experiencing daily chronic fatigue, pain and other symptoms. Add PTSD to the mix and it can take weeks to recover from the initial appointment alone.

The appointment lasted two and a half hours. Before ever meeting the doctor, I spent 30 minutes with a nurse and another 30-45 minutes with a resident who did my intake. The resident asked about my mask. She wanted to know if I had some sort of viral infection and for a moment I started to panic, wondering if I might be in the wrong office with the wrong doctor, but once I explained that I thought pollen responsible for kicking off my summer of misery, she got the gist. I still can’t believe that if she’d worked in that department for any length of time she wouldn’t have seen other patients wearing them, but I decided to let it go. She was only a resident and not the doctor I was there to see.

She did my history, covered all my symptoms, looked through all of my symptom pictures and recorded what types of substances and triggers I got them from. We talked a little about why I think I have gastroparesis and how my reactions can contribute. I brought in extensive notes on my history with allergic reactions, what I think I’m genuinely allergic to, what types of symptoms I have, my triggers and what’s been happening since last spring (all of which you can read about here). She contributed several comments to the conversation that were both astute and reassuring. Everything seemed to be fine and we appeared to be on the same page.

She left to get the doctor and I got antsy, so I wandered around the exam room and took a picture of the grounds from the window with the rain falling. I was excited that it was raining and that I might get a break from the pollen and my mask. I was looking forward to getting out of there. When the doctor came in, I was perched on the window ledge. I came forward and shook his hand and I thought I was smiling, but he kept frowning at me and I immediately questioned if I’d done something wrong. He asked me to sit down and I really didn’t want to, but I thought maybe he’d feel more at ease if I complied, so I did.

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He had a lot of questions for me and my nervousness grew to full panic. He disagreed that I was reacting to chili powders and peppers at all and that they might be anaphylactic or causing breathing problems (he said it was my POTS, which is part of it, as it gets really hard to control when I have a reaction, but what MCAS doctor shouldn’t know this already and should I have told him only the things that were related to my MCAS and not HOW my MCAS affects my POTS, as well?). He started to doubt entirely that I had any problems with food at all, even though I get severe reflux, headaches, runny noses, breathing issues, diarrhea, hives and more right after eating specific foods. He wanted to blame any food related issues entirely on my possible gastroparesis, even though the low FODMAP diet had all but corrected my problems prior to this major flare with MCAS and then I was even reacting during the testing phase for the low histamine diet while I was seeing for sure what I needed to eliminate. He also didn’t believe that I’d had a reaction from the vibration at the last few concerts I went to, even though I was super careful to make sure I wasn’t exposed to anything else at my last. While he seemed to believe that all my other symptoms were real and valid and that I very likely do have mast cell activation syndrome triggered by pollen this spring and he did put in for testing, I came away feeling like once again I was being accused of lying and trumping up my symptoms to try and get something or pull the wool over their eyes somehow or something, but frankly, why would I? What would I have to gain by lying about any of this? Why did he feel the need to challenge me on these things?

Of course I started feeling defensive and panicked, which means I started to dissociate and my memory went to shit and my cognitive abilities were for shit so I couldn’t even adequately argue for myself. All it would have taken was a simple “if that’s the case, then how come all my gastric symptoms resolve when I don’t eat these foods and come back when I do?” UGH. I just want to pull my hair out with the frustration of it all.

It’s not enough to type out 5 pages of personal history, allergens, triggers, provide pics, and bring my husband along for support. I guess I also have to come up with every possible objection and every possible way they might call me a liar or try to pawn me off on another specialist and plan for every defense of those possibilities beforehand, too because obviously my initial efforts are never convincing enough for these “experts.” As if I don’t KNOW MY OWN BODY and what happens to it. AS IF I DON’T LIVE IN IT AND EXPERIENCE EVERY MOMENT. It’s like I’m 10 years old again living in a household full of gaslighting narcissists, only these fuckers are in charge of my healthcare and they get to decide whether or not I get to live the rest of my life in agony or in relative comfort.

Perhaps I don’t have anything to be up in arms about since I’m getting the testing I need and was assured that they don’t give up after the first round. He also upped a couple of meds right out of the gate and talked about a couple of possible treatment strategies based on test results. It just didn’t feel quite so satisfying as if they would have just said, “Okay, we have all the information you’ve given us. Let’s run some tests and go from there” rather than grilling me like I was a witness to a crime and my testimony meant the electric chair for the accused. He even talked about treating my stomach symptoms, so why grill me like that? Perhaps he was waiting for an apology: Gee, I’m sorry if I don’t present like every other patient doc. I’m a FUCKING ZEBRA. That’s kind of our trademark.

Not surprisingly, I’ve been a terror these last 5 days and writing this has done nothing to improve my disposition. I was hoping that I would see that it was simply my medical PTSD causing me to blow this all out of proportion and that I wouldn’t harbor any ill feelings toward the doctor, but this analysis has caused no shift in emotion or viewpoint. I do understand that I might not be quite as upset if I didn’t have PTSD. I understand it probably wouldn’t stay with me so long. But I don’t have to have PTSD to be offended by the fact that yet one more doctor in a very long line of doctors simply chose not to believe everything I said. They judged my character and somehow found it lacking, wrongly so. Anyone is going to be offended by that.

It also makes me question if he completely understands how MCAS works. A lot of us get to the point where we react to almost everything and can eat or experience very little without a reaction. Why is it such a surprise to this guy when it happens to me? Am I really in safe hands with him? Is he really the expert he touts himself to be? Maybe he should be off playing with eosinophillic cells and leave the mast cells to the likes of Afrin and his ilk. As he’s the only guy in Cincinnati, I’m certainly not giving up on him yet, but I’m certainly reserving judgment. I haven’t seen any brilliance from him yet, but I can’t afford to be that picky, either. If necessary, I will travel, though. I’m not giving up on getting myself the best possible treatment for this condition and I’ll only put up with being treated like a liar and a fake in the process by someone who is of questionable expertise in this field for so long. Of course I want to give him the benefit of the doubt knowing myself as well as I do, but I am definitely reserving judgment.

I will be working on my testing over the next couple of weeks (wouldn’t you know pollen counts just took a nose dive and I’m suddenly feeling much better, so I have to get things riled up, first by going off some of my meds). Then things have to be mailed off to special labs around the country so it may be a while before I have test results, but as soon as I do, I’ll let you all know how things turn out! Thanks for putting up with my ranting! xx

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5 thoughts on “MCAS & Doctors Disbelieving Patients

  1. I am sorry this happened. 😦 Every single emotion you describe is exactly how these situations affect me – especially your words: “It’s like I’m 10 years old again living in a household full of gaslighting narcissists…” YES. that’s how it feels – EXACTLY. Hopefully, they will be able to help you. Be kind to yourself as you go through this, and remember that you are NOT alone.

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  2. Ugh. How scary. Do you have anyone who can go to doctors with you and speak for you if you start to dissociate? My Partner always goes to my appointments because of my trauma history and general tendency to speak more ADHD (read: fast, interrupting and rambling all over the place) when triggered by medical environments.

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    1. Actually, my husband was with me, but I’m afraid it’s a case of the blind leading the blind and he’s there more for emotional support than advocating. He does his best, but with having ADD and brain fog himself, he gets pretty overwhelmed and he doesn’t quite know all the science behind all this stuff, so he ends up just as flummoxed and frustrated. I wish there was someone else, but the only friend I have in town has similar issues, lol. Guess that’s what happens when all the healthy people jump ship. 🤷‍♀️ Hopefully this is all a matter of degrees of understanding anyway and won’t be a problem in the long run. It’s just exhausting to always feel never understood or believed.

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