On being believed

So I have a chronic illness. At least, I think I have a chronic illness, no doctor in 7 years can actually tell me what's wrong with me. The primary symptom was a mucus driven cough after eating, but over the years I've accumulated a myriad of other random symptoms. I'm pretty public in saying I have a chronic illness at this point even though I can't get a clinical diagnosis.

The most likely candidate appears to be mast-cell activation syndrome, or MCAS. Mast cells are essentially the cell in your body that are responsible for allergic reactions. They're the cells that regulate histamine release, which most people will know from antihistamines you take during pollen season. Technically, they're part of your immune and neuroimmune system, but as far as I know MCAS isn't classified as an autoimmune or immune system disease/disorder. I'm not a doctor, I'm just trying to understand my own health and manage whatever it is that's going on inside my own body.

At this point I've seen more doctors than I can count, and every one of them cannot tell me what's wrong with me. Most of them make me feel like it's all in my head. “You shouldn't be taking promethazine for a cough", scoffs my endocrinologist, despite me saying that my respiratory problems clear up magically after taking it, and that the cough can be so bad I sometimes vomit.

I'd originally been prescribed promethazine about five years into starting to exhibit symptoms, partly because I started to believe the "it must be all in your head" dismissals I'd received from medical professionals, and partly because I knew I had medical history with anxiety attacks (though I'd done a lot of therapy to deal with the triggers for that). Promethazine in Germany is prescribed for anxiety, and they want you to see a psychiatrist to get it typically (despite the fact it's almost impossible to see a psychiatrist here in Germany). After taking promethazine during a coughing fit, the symptom magically cleared up. It turns out that promethazine, whilst prescribed for anxiety due to its sedative effects, is actually a powerful first generation anti-histamine. A cough after eating that gets cleared up by taking an antihistamine, how curious?

Then there was the nausea, and the stomach cramps, and my doctors couldn't explain that either, but they prescribed vomex for that. Dear reader, it turns out that vomex, or Dimenhydrinate, is actually a form of antihistamine. I didn't know that when they were prescribed to me. At least the nausea went away, here's to hoping it does again tonight.

My doctors also couldn't tell me why I kept presenting with symptoms of a UTI but no actual UTI. This one's apparently very commonly ignored by doctors when women — trans and cis alike — present with it. They'd listen, they'd take their notes, and they'd have me do their lab tests, and then... nothing. Nothing would come of it. Turns out UTI like symptoms can be triggered by leukotrienes in urine. Leukotrienes are a byproduct that your body produces when you've had an allergic reaction (or other inflammation).

So now I'm going to the doctor like "you've prescribed me two antihistamines and both have cleared up my symptoms, do you, maybe, uhh, potentially think that maybe it's the fact that they're antihistamines and that's why it's helping me?" and they act aghast: is this patient diagnosing herself?! How dare she! That's our job!!

The thing is though, I've been to the doctors so often now, that I'm practically a frequent flyer, and you haven't been doing your job. I don't want to be like that. I've ended up leaving the permanently employed workforce partly because employers really don't like the unpredictable nature of "will be randomly completely wiped out for two weeks without an explainable cause".

I actually wrote this originally on a week where I slept all day on Monday, exhausted, slept in the afternoon on Tuesday, after a doctors appointment, exhausted, and slept on Wednesday and Thursday, exhausted & fatigued both days. Random unexplained fatigue: try going to your doctor with that one, that'll definitely make them think you're just lazy and in it for the sick note (editor's note: freelancers don't get paid sick leave unless they've been sick for more than 6 weeks with a single diagnosable thing).

Though apparently my experiences with doctors aren't too uncommon, at least that's what people tell me, but I'm pretty sure you've never had a doctor ask you what dosage of a medication you'd like — I don't f--king know? You're the doctor!00

The thing with being ignored by doctors for so long is that you practically end up becoming your own doctor. Maybe I'm just weird, but if I were actually a doctor, and I had a patient presenting to me often with weird symptoms, I think I'd want to find out why, if not to help them, then just to satisfy my own curiosity. It's almost like these doctors don't actually want to be doctors, maybe their parents made them become doctors or something, who knows.

Oh, but remember, you're not allowed to diagnose yourself. And goodness no, you can't expect me to diagnose you in the 10-15 minutes we have together — that's a complex illness you're describing!

So what's a girl to do?

Oh, p.s., getting tested for tuberculosis 5 years after first presenting with symptoms was fun. No, really, first class medical training in practice there. If that had been the case I would've probably given half of berlin tuberculosis.0 It was definitely not stressful or worrisome waiting for that test to come back negative (which it did, thank god)

At present there's two medical pathways to actually get diagnosed with MCAS: the clinical route or the symptomatic route. Wanna know the kicker about the clinical route? The two things they test for are histamine content in blood and tryptase levels. Take a guess how long those exist in your blood for after an active MCAS attack? Since these are the primary markers, you might be forgiven for thing it might be several hours or a couple of days, but, ha, no, it's 30-45 minutes. It usually takes you that long just to get in to get blood drawn, let alone analysed within that timeframe (or properly stored and defrosted to test later). Also, weirdly hospitals don't seem to test for these when you're showing signs of an MCAS attack, but they test everything else. (Don't ask me how I know..)

Also, fun addition beyond being allergic to like half of all food substances, MCAS is also triggered by heat, cold, and stress. Good f--king luck surviving in today's world, seriously.

Also, what I've not mentioned above is that MCAS is a chronic illness specifically because it affects multiple symptoms in your body:

Respiratory (cough, shortness of breath, etc)

Stomach/GI (stomach cramps, nausea, other weird things)

Bladder (wetting the bed is never fun, nor are UTI like symptoms)

Skin (yeah, my doctor couldn't tell me why my skin was often itchy, but after I switched to a hypoallergenic washing products for clothing that symptom mostly went away)

Neurological (this one's perhaps most scary as a "knowledge worker", but symptoms include brain fog, memory issues, problems keeping a train of thought, and other stuff that'll have you concerned you might have early onset dementia)

Heart conditions (MCAS has frequent comorbidity with POTS, and has been known to cause elevated heart rates, amongst other symptoms)

Random fevers where either your entire body gets really hot and your break out in a sweat even though it's not really that hot, or weird localised fevers where an area on your body will be 40°c (104f) despite your core temperature being normal.

That's all at a very high level, so it's very not fun to deal with. Sometimes it'll affect multiple systems at once, or times it'll affect different systems over the course of several days, or even over several months, depending on the trigger. (Because there's triggers literally everywhere with your mast cells being hyperactive).

Oh, and before anyone mentions exercise, because exercise cures everything, uh, yeah, no, that's actually one of the worst things for someone with potential MCAS, because heat and exertion are both triggers.