MCAS: The truth behind my Instagram photos

MCAS and Instagram

Everybody has their own way of dealing with MCAS [Mast Cell Activation Syndrome].

Some document their symptoms and share pictures of their reactions.

Others discuss treatment options that have helped or made them worse.

Personally, I either disappear off the face of the earth – that’s when I’m truly struggling – or pretend that everything’s okay because I’d rather not concern my family or friends.

But seeing as it is World Mental Health Day [10 October 2018] and we’re being encouraged open up for the sake of our mental wellbeing, I’m going to share a secret.

I’m not always fine. In fact, more often than not, I’m petrified of this frustrating horrible disease and just internalise it.

Of course, you wouldn’t know it by looking at my recent Instagram feed which is filled with images of stunning Bajan beaches – the snaps were taken on my most recent holiday. (Regular readers will know I struggle to relax but Barbados, which was the inspiration for the name of this blog, is the one place in the world where I truly switch off).

View this post on Instagram

The calm before #stormkirk #pink

A post shared by Helsy/Relax Ya Self To Health (@relaxyaself2h) on

However, the pictures only tell half the story because behind the scenes I was also dealing with very nasty tongue swelling and throat closing episodes that left me feeling frightened, groggy and anxious.

I thought I was beginning to beat this damned condition. [Read more about MCAS here] The month before I’d gone for 10 days without a serious reaction, managed to play two tennis matches – popping a super strong antihistamine beforehand as a precautionary measure – and even reintroduced certain foods.

I was beginning to feel like my old self, especially as I was returning to activities that used to bring me such joy.

But a couple of days before the holiday, my trusty car stopped working. Just like that… Turned out a cambelt (no, I had no idea what that was either) had gone, there was engine damage and I needed to buy a new vehicle. WTH? I was strapped for cash (having moved house earlier this year), and still chasing invoices from publications that hadn’t paid me for four months.

My head began to spin.

I started panicking about the car being stranded at the garage while I was away, the storage fees it might incur, how I’d commute to the news shifts I had booked in immediately after my holiday (I live alone) and whether I’d be able to find a car within one day of my return.

Then boom…my mast cells decided to throw a party gifting me a tongue swelling reaction the night before my flight.

It happened again on the plane – despite taking meds as a precaution before the journey – and then every day of the trip bar one – in some instances occurring twice in 24 hours.

On the last two nights, intense palpitations – another symptom of MCAS – were to be my wake-up call, not the sound of the ocean.

Although I refuse to be defined by this condition, the truth is that living with MCAS is exhausting and frightening.

When I’m in a continuous flare, the thought of suffocating to death (or my meds failing through overuse) is never far from my mind.

View this post on Instagram

Take me back… #beachbum #serenity

A post shared by Helsy/Relax Ya Self To Health (@relaxyaself2h) on

Even if I manage to control a reaction, I’m left wiped out for days. The accompanying brain fog is a joke – I struggle to formulate words – not great when I rely on them for a living. The stabbing pains in my joints aren’t much fun either.  Oh, and every day I wake up with a sore throat or feel as though I’m fighting something.

So why am I telling you this now?

Well,  when the going gets tough I stop speaking – I AM a chatterbox so this is out of character for me.

I vanish from social circles and, seemingly, stop blogging. (Apologies for the dearth of recent posts – now you know why)

I’ve since recognised this withdrawal trait in a couple of my (non-MCAS) friends. I suspected one was struggling recently so I sent a text to let him know how grateful I was to have him in my life and thanked him for being amazing.

He responded saying he had woken up to my message, texting back a row of love hearts. He was having a hard time and thanked me for making him feel better.

This MCAS journey has taught me about anxiety – something I never used to struggle with – and how to identify the individuals who might be struggling with their own mental wellbeing.

It’s made me realise that if someone is behaving out of character or is being non-committal that there could be more to their actions – or lack of them – than meets the eye.

We shouldn’t judge but simply be kind. A simple ‘are you okay’ could make all the difference.

For more articles on mental health and wellbeing you might like to read our interviews with Jonny Wilkinson and Gail Porter.

And meet the man who is turning barbershops into safe havens to prevent male suicide

Helen's Health, Wellness
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2 Comments

  • Reply
    Bethan Gordan
    13th December 2018 at 10:17 pm

    Dear Helen…. I don’t know if you remember me, and I hope you wont mind me commenting, but I have just somehow stumbled across this website / article, and was amazed to discover that it was written by you. I don’t really know anyone else with the condition.. besides random strangers in online support groups…. so its weird to suddenly find out that someone I once knew has it aswell.

    I was diagnosed with MCAS several years ago after years of struggling with allergic reactions and hypersensitivity. I also have Ehlers Danlos Syndrome and POTS/ VVS. I have too many MCAS triggers to mention, but smells / fragrances and chemicals are my biggest triggers. I have to take a lot of mast cell stabilizers and antihistamines to try and reduce my symptoms. I also have chronic pain (from the EDS) and anxiety, and am housebound and isolated a lot of the time as a result.

    I know we haven’t spoken for a very long time, but if you ever want to talk, it would be nice to hear from you.

    Bethan x

    • Reply
      Helen Gilbert
      14th December 2018 at 11:33 am

      Hi Bethan,
      Apologies, I’ve just seen this (I was at the hospital yesterday) and have also received your private message to which I have just replied.
      I’m so very sorry to hear about your health struggles and your other chronic conditions too and I’m more than happy to have a chat on the phone 🙂
      xx

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