Self-Care is Healthcare

Discovering self-care without shame

Blue eyed red haired young woman in blue blouse peeking from behind curtain delivering message about importance of Self-Care

I have a rare condition called Mast Cell Activation Syndrome (MCAS).

I’ll be minding my own business, sitting in bed or at my desk, writing an article at the end of the day, when without warning my eyes will start feeling itchy. Then my ear canals. Then this wave goes through my body, head to gut, making me feel sick to my stomach.

By this point I typically mutter “oh shit, not again”, walk to get my husband and hitch a ride with him to the ER.

A “regular” at the ER

I have now gone to the ER half a dozen times with a severe allergic reaction to… nothing. We have the routine down pat at this point. At the ER they ply me with antihistamines and steroids, sometimes an antiemetic for good measure, and send me home. I have unfinished bottles of Prednisone sitting in my medicine cabinet. Also antihistamines.

I’ve been tested for every possible allergen. Had exotic bloodwork. A bone marrow biopsy. All negative. At present I am supposed to see a specialist at Stanford, but not at the clinic, on the research side of things. Because I am not a puzzle that my allergist wants to solve. Who knows, maybe my case will be published one of those days (he asked, I said yes, happy to advance scientific discovery).

Meanwhile, I carry an epinephrine device at all times.

Is it all “in my head”?

By my third episode, I wasn’t scared, instead I felt embarrassed, ashamed. I felt like I was taking up space in the ER. I felt “weak” and “needy”.

Maybe my symptoms were all “in my head”, I thought, was I attention-seeking? Maybe I just needed to breathe through it. Maybe it was a “hot flash” (I am a woman of a certain age, after all)?

Suffering as a virtue

I snapped out of it, and realized I had been conditioned to think this way. The culture of Poland, where I was born, traditionally characterized suffering, particularly women’s suffering, as a virtue. Think Mary, Mother of God, the model of virtuous suffering.

Pain was to be endured, not treated. Forget Ibuprofen, stiff upper lip was the preferred method. I gave birth 4 times without pain relief. I scoffed at women who chose to reduce pain by requesting an epidural. Pain was to be worn like a badge of honor. How messed up is this?

Learning to value self-care

It’s been 2 years since my first MCAS episode. I’m proud to say that I’ve since learned to take care of myself, without guilt and shame. I’ve embraced self-care, self-compassion, and self-forgiveness, shedding the vestiges of my cultural past.

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