One aspect of living with mast cell disease that I don’t see discussed often on message boards or in the medical literature is the impact this disease has on our mental health.
Mast cell degranulation can cause anxiety, depression, confused thinking, aggression, anger, rage and other emotions/reactions which are traditionally grouped in the mental health category. As a patient we need to be aware that our mental health can be affected drastically by the mechanics of the disease itself.
It’s also important that we acknowledge that living with a chronic, debilitating and incurable disease, no matter which one it is, can really knock us for a loop, psychologically speaking. I know I struggle with acceptance of my limitations almost daily even though overall I’ve grown to accept that this is my reality and it probably isn’t going to get much better for me. It may even get worse sooner than I’d like.
It’s really easy to fall into the “poor me baby” thinking when you are chronically ill.
That’s why I go out of my way to find people and things and experiences to help me cope better. If you haven’t heard of Sam Berns then we’re in good company because I had no idea who he was until a few minutes ago myself when I found his Ted Talk video called “My philosophy for a happy life”.
Here is a bit of the transcript:
The first aspect to my philosophy is that I’m okay with what I ultimately can’t do because there is so much I can do.
Now people sometimes ask me questions like, “Isn’t it hard living with Progeria?” or “What daily challenges of Progeria do you face?” And I’d like to say that, even though I have Progeria, most of my time is spent thinking about things that have nothing to do with Progeria at all.
Now this doesn’t mean that I ignore the negative aspects of these obstacles. When I can’t do something like run a long distance, or go on an intense roller coaster, I know what I’m missing out on.
But instead, I choose to focus on the activities that I can do through things that I’m passionate about, like…..
Here’s the entire video presentation:
If I could speak directly with Sam, which I can’t since he passed on shortly after making this video, I would say to him:
Thank you, Sam, for blessing this earth with your beautiful soul during your brief presence here. You’ve given me renewed hope in the power of positive thinking and made me remember to forget about my own mast cells more often and focus instead on the things I can do through things I am passionate about in life, like heirloom teddy bear making and spreading #mastcelldiseaseawareness to the world.
I encourage all of my dear readers to take Sam’s words to heart and remember, we’re in this
mast cell human craziness together.