I was chatting with a friend the other day who was afraid they have “long COVID” and, based on her symptoms and her doctor’s opinion, it’s probably the case. We talked at length about the similarities between my own symptoms living with mastocytosis and hers, as well as the recommended treatments, and marveled at how the human immune system works.
But it’s so much more than the symptoms of a dysregulated immune system that we found we have in common.
She lives in an area of the world that is still in pretty strict lockdown which means she can’t leave her house except for specific reasons and she can’t go far or be around more than a handful of people or else.
Boy, can I relate.
That is how I’ve been living for years, thanks to my disease progression. I’ve only really been able to go out into public again for the last three years, in limited capacity, thanks to the mast cell stabilizers and techniques I’ve learned that help me be safe. Before that, the world was a dangerous place for me, filled with triggers that would cause my immune system to go into overdrive and send me into anaphylaxis of varying degrees.
Food, scents, smoke, heat, vibration… you name it, they all triggered me.
I was wearing face masks long before COVID and I hated them at first, but they did help to keep my mast cells calm in a world full of air borne triggers. I had to practice social distancing because I couldn’t expect the world to cater to my needs by not wearing perfume or cologne. And I still can’t go far, or I risk being without emergency care should I need it.
It was extremely mentally challenging to have to live that way but at some point I got used to it and eventually I learned to enjoy the solitude. I found peace with being a recluse and started to not want to be out in public. Even when I finally got my diagnosis and found the right medicines to help me rejoin the world of the living, I preferred to stay home in my “safe place”. I actually enjoyed my new life.
Of course I have always been more of an introvert, so it was easier for me to withdraw from society compared to extroverts who thrive on human interaction. My friend is an extrovert and it is really affecting her mental health badly to have to live this way. On top of the lockdowns and quarantines, the uncertainty of living with lingering symptoms that may never go away is HARD.
I try to be comforting and help her come to terms with and manage her physical symptoms (since treating long COVID is a lot like treating mast cell disease) but there’s not much I can do to help with the mental toll it’s taking.
Sometimes I don’t know what to say, so I don’t say anything at all and just listen. 😔