Why did you decide to donate to Mast Cell Action?
I had endured decades of increasingly severe and disabling reactions, including, since 2006, agonising sensitivity to all forms of light, even through layers of clothing. As you can imagine, many people considered this so extreme and unusual, it had to be psychological. The turning point came from me in 2013 when a nutritional therapist suggested histamine intolerance, and a low histamine diet plus histamine-reducing probiotics and supplements set me off on my journey out of the dark.
It was a huge relief to be finally diagnosed with MCAS in 2020. Having a real medical label made me so happy, I wanted to frame the test results and put them on the wall! I had managed to get some money while living in the dark through writing a book about my experience (Girl in the Dark, published by Bloomsbury), so I decided to celebrate my new status by donating to Mast Cell Action.
What interests you most about Mast Cell Action?
It gives people with MCAS that most valuable thing – credibility. and boy do we need it! When you have to bound through life explaining 6 impossible things to everybody you meet (e.g. that you react to their perfume, that you might be able to eat an apple today but you’re not sure yet, you’re worried about winter because you might react to your heating, you can no longer wear most of your clothes because they make your legs swell, you can’t take painkillers because they make you worse, there is a pill you’d like to try but you don’t feel well enough to risk it yet) you come to the conclusion that this condition is tailor-made to make us all sound barking mad.
I am forever pointing to the bits on the MCA factsheets which say “new triggers may develop over time”, and “when patients are particularly unstable, the range of triggers and severity of reactions can increase” and “it is by no means guaranteed that a treatment that works for one patient will work for another. The response to treatment can be unpredictable… Some drugs…will in fact trigger adverse reactions in patients.…” All of these statements are vital to help explain our wild lives.
What would you tell others about Mast Cell Action?
Sufferers and their families: This is the place to find people just as weird as you! Yes, they are out there.
Non-Sufferers: MCAS is probably the most isolating, debilitating, underresearched disease you’ve never heard of.
What would you say to other people considering donating to Mast Cell Action?
Do it! We are starting from such a low base of understanding, acceptance and research, compared to other conditions, your money will have so much more impact.
What message would you like to share with the MCAS community?
This is what I have learnt from my MCAS journey into and out of the dark: Even the most impossible, terrible, irredeemable situations, where there seems to be no way out, can sometimes unknot themselves, against all odds, when hope has gone.
Because when hope has gone, uncertainty remains: the future is not set.
It is worth hanging in there, just in case. I am so glad I did.
What message would you like to share with the wider community?
Somebody once said that three of the most powerful words in the language are “I believe you.”
If you are dealing with people who are chronically ill, particularly people with MCAS with their crazy catalogues of varying triggers and symptoms, please remember the importance of listening – really listening – to what people are telling you. Keep your mind open, no matter how what they are saying differs from your own experience of life. Resist the temptation to pull up the shutters of scepticism and think “this cannot be”. Remember: we understand only small parts of this wonderful, terrible world.
If you are able to and would like to donate, like Ruth, please click here.
Any amount that you can spare, big or small can make a huge difference to the lives of those living with MCAS.
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Mast Cell Action relies entirely on the generosity of people like you. Please make a donation now and together we can make a difference to those affected by MCAS.