We Need To Talk About…MCAS and POTS // Guest Profile

Happy New Year, folks! A new year and new opportunities. For many, they include plans for self-improvement in the first few weeks and months of the year. But when you have a disability, every day has to be used as an opportunity. There is a significant amount of work you have to put into maintaining a disability every single day. But try to think of it like a job; You would expect payment for any and all work you put into that, so why should this be any different? Self-care is hard-earned payment to your body and mind. Find a payment that works for you (mine is books & fancy tea) and don’t forget to cash that cheque often!

I’ll leave you with that for today and hand over to Kari – A wonderful lady who brings us our first guest post of 2017. Enjoy!

Q. Can you tell me a little about yourself? Do you work, if so what do you do? 

I am a PhD student studying literature. I hope one day to be a lecturer at a university. I love reading and learning and being in libraries and sharing ideas. 

Q. Can you tell me about your condition(s) and how they affect you?

I have a couple of conditions. The first is called Mast Cell Activation Syndrome (MCAS). The mast cells are part of the immune system. In a person with MCAS, mast cells are overactive and get triggered by all sorts of things that shouldn’t really trigger them. MCAS leads to a huge range of symptoms, from merely uncomfortable to really debilitating. At its most dangerous, an MCAS reaction can lead to fatal anaphylactic shock. The most common triggers for MCAS patients are foods, extreme temperatures and airborne chemicals.

I also have Postural Tachycardia Syndrome (POTS). In all people, when we stand up our blood is pulled downwards to our legs and feet by gravity. In a healthy person, the blood vessels will constrict to push the blood back up to the heart and the brain. In someone with POTS their blood vessels don’t do that, which means their blood doesn’t get back to the heart and the brain properly. As you can imagine, this isn’t really ideal! Sometimes your heart will start racing away to try to keep the blood pumping. Then because your heart is working so hard, it is really exhausting for your body and you feel tired most of the time! Other times the blood pressure might just drop and then you faint. 

Q. Have you ever had an interaction with a stranger prompted by your disability?

I once had a bad interaction with a disability support officer who tried to tell me that having a ‘study buddy’ to accompany me to the library would help me overcome my symptoms. It felt very patronising, as a doctoral researcher of nearly 30 years old, to be told that when I’m having debilitating symptoms all I need is a ‘study buddy’ to chivvy me along.

Q. What is your typical day like? Do you commute, if so what is this experience like for you?

I used to commute every day twice a day at rush hour to get to my job in central London. In the end, I had to quit my job because commuting was so awfully damaging for me. Having to stand still on the packed trains would make my POTS symptoms terrible and I fainted quite a few times. 

And for an MCAS sufferer, public transport is also a huge problem because people wear so much perfume and cologne! Fragrances are a huge trigger for my mast cells (they are for most MCAS patients) and so most days I was having reactions that would involve my throat closing up, nausea and diarrhoea. It was really awful. 

I still commute these days but not every day, and I try to do it outside rush hour so I can get a seat.

Q. What is something that would surprise others to understand about your condition(s)? 

My MCAS makes me allergic to the cold and to exercise! If I am out in cold weather for more than just a few minutes my skin on my whole body will get covered in hives and be really itchy and really painful! 

It is quite common for people with MCAS to have bad reactions to exercise. Some people might find it great to have a legitimate excuse not to exercise, but I really hate it! Before I started getting ill, I used to love going running or to spin classes! 

Q. What glimpse of wisdom can you share with our readers? 

Because MCAS is not very well known among the medical community, it took me almost a decade to get diagnosed. Doctors were baffled by my symptoms and I was often told that I was making them up or that they were just down to stress. Now that I am diagnosed and treated, things are so much better. I have learned to manage my symptoms and still find ways to achieve goals that are important to me.

So the lesson I’ve learned is that there is always a way to overcome an obstacle. Yes, there might have to be changes. Yes, you might have to redefine who you think you are and redesign what you thought your life would look like. But you are more resilient than you think you are. 

An insightful step into the shoes of a person with hidden disabilities! Thanks to the wonderful TFL Blue badge, London is set to become the ‘most inclusive city in the world’. Changes like these impact the lives of people like Kari and so many more. What a great time to be a Londonder!

Tune in next week for another post 🙂

Lily x


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