26/08/2026
There comes a certain amount of absurdity in living with a lifelong complex illness. As if being disabled wasn't enough, the universe decides to throw little contradictions at you:
“You can use a cane to help your mobility, but it will make your shoulders ache for days”
“You can use this fragrance-free MCAS-safe shampoo but ONLY if you have the hand strength to squeeze it out of the awkwardly-shaped bottle”
“You could exercise to ensure your muscles and bones don't waste away but if you do you will probably faint”
The list goes on. But what happened to me recently was probably the most unhinged example of these contradictions that I've ever experienced.
Earlier this year I suffered three episodes of stage 2-3 anaphylaxis, and over the course of the year countless stage 1 episodes. It was a crash course in Mast Cell Activation Syndrome (MCAS), a condition that commonly occurs with EDS and dysautonomia. MCAS is basically your immune system deciding everything is dangerous and the only way to protect you from these dangers is to…threaten you with extinction.
Managing severe MCAS is extremely difficult. Pre-anaphylaxis, I treated the occasional flare-up or “allergy” with antihistamines (I barely even knew what MCAS was). Antihistamines are basically the go-to treatment for MCAS. But you need different antihistamines working in different ways to be effective and whenever my MCAS is triggered enough to flare, antihistamines don't work. And my triggers are numerous: many foods, scents like perfumes and essential oils, chemicals, hair care products, sunlight, exercise, heat. You get the idea.
My symptoms range from mild rashes to IBS-like symptoms to extreme exhaustion to anaphylaxis - I can’t cook very much for my family of 5, walking into a shop is scary because of the possibility of 🎉surprise scents🎉, I can’t wear a lot of my clothes because my skin is so sensitive. It’s been improving thanks to certain medications - but for a while there things looked pretty bleak. And what’s more is - our inner bodily systems are closely linked: immune system and sympathetic nervous system and hormones etc are so intertwined that after a severe enough MCAS attack, your body develops a phobia to these triggers - I use the word phobia because you start flaring up even at the thought of a sprinkle of paprika on your chips. This is the tricky, often-dismissed-by-doctors world of physical symptoms appearing from the psychological consequences of a very real danger.
I told myself, I need to do something about this. I was already taking 4 different types of antihistamines and a mast cell stabiliser. So I did all I could think of and went on a low histamine diet. Me - an autistic person who already has a somewhat restrictive diet - going on a low histamine diet is like a really bad joke. But it worked!? My symptoms lessened to a very manageable, pre-covid pre-anaphylaxis baseline. It was like sorcery. Really depressing sorcery because low histamine diet = seriously lacking in flavour.
A few months in and I had never felt better. Then over time I started dealing with another set of symptoms: mainly, I was beyond exhausted. I’ve always suffered from chronic fatigue, but this was beyond even that somehow. I could no longer cook elaborate low histamine meals; buying ingredients was a waste of money when I couldn’t use them. I threw away the low histamine diet. I couldn’t leave the house, could barely leave bed. This wasn’t my normal fatigue. This was Advanced Fatigue™ and I can’t explain it in words how depleted I felt.
I finally got an MCAS diagnosis, and at the same time just happened to be sent for some non-standard vitamin tests. One of those tests was vitamin C.
See where I’m going with this?
It had been seven months since I’d consumed any decent amount of vitamin C. Citrus fruits are on the “iffy” side of MCAS-safe. I occasionally used small amounts of lemon juice in my cooking because I enjoy flavour, thank you very much. But that was about it. I didn’t really think anything of it other than “I miss a juicy mandarin”.
I got my Vitamin C test results back, and I am aware that Vitamin C tests are notorious for false-low readings - however my result wasn’t just “low”. There was practically zero vitamin C in my body. Iffy citrus fruits aside, my sensitivities were so high that other foods containing vitamin C were also largely on the “no” list.
I had literally developed scurvy. In the year 2026.
SCURVY.
Here are some fun facts about this particular vitamin deficiency (trigger warning for potential grossness):
Vitamin C is crucial for developing and maintaining connective tissue. This is why you hear of people with severe enough scurvy having old scars reopen. Imagine this: a person with a connective tissue disorder and scurvy. The irony.
Vitamin C is also - paradoxically - a mast cell stabiliser. Don’t ask me how that works I’m sure it makes perfect sense to oranges.
The spots on my legs were in fact not normal and were tiny haemorrhages in every single one of my hair follicles: a symptom of scurvy.
Had I not had that test and picked up this disease, I may have started losing teeth.
My absolute favourite scurvy fact though is that it is extremely easy to treat. I started taking Vitamin C supplements several times a day - just your average Cenovis or whatever. After a few days, my fatigue lessened considerably. I mean in hindsight I don’t even know how I was alive. And then the spots on my legs cleared up. And I am now weeks into taking vitamin C and I would like to say, pending a review, I am now cured of Scurvy.
Anyway this is both a cautionary tale in vitamin deficiency and a great story to tell a group of strangers next time I’m forced into doing one of those awkward ice-breaker activities at an event.
Photo: The first mandarin I ate in 7 months. It was significant.
Pssst - None of this was written with AI. If you'd like to see more long-form posts like this, please let me know! It was a lot of fun but also energy-consuming!
