Why I Created M. //
I thought the discussion about MCAS would have matured by now. Apparently it hasn’t.
Reading time: 4-6 minutes (depending on brain fog)
When I was first diagnosed with MCAS in 2023 I was a complete and utter mess. I’d had to stop work, could barely dress myself and was petrified of pretty much all food - try turning down a tomato when your family are southern Italian! It’s not pretty.
In this dazed, and clearly delirious state I also convinced myself I had enough capacity to create an in-depth, evidence-based, patient-led, all-singing, all-dancing resource for others going through the same hell as me.
I was wrong.
I did, however, manage to cobble together a basic instagram account where I’d share various bits and pieces I’d learnt about MCAS during my own research. To my surprise it gained a few hundred followers fairly quickly - many of whom reached out to me and shared their own MCAS experiences.
As time went on, my symptoms stabilised, for the most part, I returned to work and I assumed posting MCAS information on socials wouldn’t really be needed as others would likely do the same (probably better than me) and charities and medical organisations would step up and plug the knowledge gap.
I was wrong. Again.
“I found the familiar frustrations with diagnosis, lack of detailed resources and dodgy low histamine food lists had all been amplified.”
I recently had a bit of a relapse and, being stuck in bed, thought I’d peruse the MCAS socials to see what people were talking about. I’d assumed things would have progressed a fair bit, the charities would be positing better content, there would be higher quality information and those of us with MCAS feeling we had a stronger voice.
Instead I found the familiar frustrations with diagnosis, lack of detailed resources and dodgy low histamine food lists had all been amplified. Everything seemed even more confusing than before. This seriously wound me up (admittedly it doesn’t take much when you’re bed-bound and bored) so I decided to channel some of that boredom into something constructive: M. //
M. //
When the medical community don’t know anything about a health condition, or worse, don’t believe your symptoms are real, you end up having to take matters into your own hands. I have a background in science and healthcare so in my case this meant copious amounts of research and over the past 4 years (pre-diagnosis onwards) I’ve amassed quite a hefty pile of notes, journal articles, medical books and other random paraphernalia.
I’m definitely no expert but seeing people repeatedly fall into the same pitfalls I did has made me realise I have a responsibility to share what I know.
Instagram and other socials have always felt too confining for me and don’t lend themselves to complex topics like MCAS very well, so I decided to take the plunge and create M. //
Here I’ll do my best to not only share what I know about MCAS but discuss all aspects of life linked to living with it - the highs, the lows, the WTF moments and everything in-between that so many of us experience.
I’m aware many of us share similar frustrations with what’s currently out there re MCAS and it’s really important to me that I don’t just repeat what’s already being said but instead, try to offer a different perspective and address some of those frustrations head on. This is why the content you find here on M. // will be…
Uncensored (*@!&)
Information about MCAS has a tendency to feel clinical or “sanitised” and is usually written in a purely medical context. This not only intellectualises the condition, it actually dehumanises it too. MCAS is a very real, very raw experience for so many of us and affects every aspect of our lives. It’s often intense, chaotic and messy and I want the articles on this platform, including the fruity language, to be a true reflection of what we’re all really thinking and feeling. Real. Uncensored.
Independent
MCAS is, regrettably, not just a medical issue, but a political one too. I’ve seen first-hand how some patient advocacy groups prioritise the demands of the medical establishment over that of their patient groups. When these advocacy groups align themselves to healthcare providers they create an unavoidable conflict of interest and inevitably stifle the voices of the very people they’re meant to be serving. M. // is all about expressing real experiences of mast cell disease openly and honestly. Unfiltered and free from censorship or outside influence.
Personal
Chronic conditions like MCAS are ever-present. They exercise influence over every aspect of our lives - our physical abilities, body image, mental health, relationships - even our sense of self. Through M. // I’m determined not to shy away from the trickier, deeply personal conversations many of us desperately need to have. We’re all real, crazy, complicated people and not just medical statistics.
So this is M. // - I’m just getting started so bear with me while I figure out how to get things rolling amongst health, life and work commitments. I’ll be adding articles on a monthly basis at the very least - weekly at times, and will continually add more detail to the MCAS pages as new information and evidence emerges.
M. // isn’t about, or for, me though, it’s for all of us with, or caring for someone with, MCAS or one of its associated conditions. It’s a place we can share experiences, ponder, have a good whinge and figure out how to live well with MCAS - together. If you have questions, feedback, ideas for future posts or just want to chat, you can reach out to me via instagram (XXXXXX) or here.
Let’s do this. ◼
M. //
