Frustration at another MCAS flare

What I need is compassion, not shame

Thursday was Opening Day for the MLB season, a time of hope and optimism and the joy of spring beginnings. To celebrate, we decided to have hot dogs for dinner. Maybe due to my excitement for the return of baseball, I did not even think about the fact that hot dogs could very likely set off my MCAS before eating them. And then they set off my MCAS.

Part of me doesn't want to write about this incident, because I worry that it reinforces the idea that chronically ill people are to blame for our illnesses, and if we tried harder, we would be healthy. That's the underlying thought in our society, right? That chronically ill people deserve our illnesses because we are too lazy to get healthy. If you believe you could never become chronically ill like me because you make healthy choices, part of you believes I'm to blame for my situation, right? And now I've given you evidence that is true because 1) I didn't stop to think that hot dogs are a category of food that commonly trigger MCAS and 2) I ate two hot dogs, a food generally categorized as unhealthy for everyone, never mind someone with extra sensitive mast cells. So who am I to complain or feel sorry for myself?

Part of me still believes that, so I'm not going to be angry if you do too. When I started feeling "funny" immediately after eating, I went to bed to lie down and finish watching the Blue Jays game in bed. They had an awful game, losing in spectacular fashion. Shortly after the game’s end, my heart rate spiked, I felt leaden in body and light in mind, as if my head was a balloon hovering over me. The swoosh of my heartbeat in my ear told me my brain inflammation was getting out of control¹. I cursed myself for being so careless and unfortunately, used some shaming language towards myself. My goal to not shame anyone, including me, is still a work in progress.

I took Aspirin, Benadryl, and Gravol. I drank litres of electrolyte drinks. I laid in bed, disappointed with myself again that I still haven't talked to my doctor about getting an EpiPen. My breathing was slightly affected, and I wondered if I should go to the hospital. That seemed like overkill, but I didn't change into my pyjama bottoms in case my status took a turn for the worse. I had a restless night, and Friday felt like a hangover day. I got better by the evening, but I still felt woozy when I stood up too fast. I did that silly sports thing² where I told myself if the Blue Jays bounce back, I will too. Fortunately, we both did.

I said I'm not angry at you if you blame me for my predicament because part of me blames me too. And that's true. But, I am asking both of us for compassion. It is so hard to adjust to this life that I have now. And it isn't my fault I got infected with COVID. I'm a victim of a system that values short term profit over worker safety. It isn’t my fault that I was born with genetics that made me susceptible to MCAS and POTS. It isn’t my fault that I’m on a years long waitlist to see an immunologist with the expertise to treat and advise me. It isn’t my fault post-viral illnesses are not yet well understood with easy treatments. It’s due to my own initiative that I even knew to take extra antihistamines. I’m doing the best I can. I hope you can see that.

What does my anger with myself tell me? I'm angry that I can't simply enjoy a celebration as is. I must be vigilant at all times and that is exhausting. It also goes against all the therapy and practice I've done to not be hypervigilant due to PTSD! It's so hard. My anger is part of my grief over getting ill. In a different timeline, I would have been at the SkyDome³, cheering on the Jays in person. I really miss the life I thought I’d be living in my 40s. I'm angry and sad that I'm so alone in this. I don't have anyone who is really looking out for me. My mom is close to being that person, but she doesn't have all the information about MCAS and follows my lead. It's just so lonely to live this way.

Wishing this was my reality this week.

If part of you blames me for this flare, or for having MCAS in general, your anger might be there to protect yourself, in a way. It's scary to think that you are also vulnerable to pathogens, including viruses. It isn't comfortable to understand how much luck plays a role in our lives, so I understand when someone decides to believe that they are fully in control of their health. I understand the comfort of believing that getting sick is a good workout for our immune system, even though the evidence shows it’s risky in the short and long term, with no benefits. It's almost too much to bear to think that you could also just be one viral infection away from losing life as you know it. That's a terrifying thought and I completely understand the urge to ignore it or transform it into disdain at the chronically ill.

I understand it, but I'm still going to ask you to sit with that fear for a little bit. I'm going to ask you to use your gratitude for your own health to power your compassion towards those of us who aren't lucky to count good health as a blessing. It would be so appreciated if you could help us feel less alone, help us advocate for a stronger safety net, and/or help us feel loved and cherished. We’re in this life together.

And to my friends and acquaintances who do help me feel loved and less alone: thank you. You mean the world to me.

1. I’m pretty sure that’s what that means. It only happens when I’m in flares and have a headache.

2. Actually, I don’t know if this is a thing that other people do!

3. Rogers Centre