When I was first diagnosed with MCAS I thought “a condition I can control!”

I genuinely believed that since there were clear & obvious triggers - I could put in the work, overhaul my life and be free of attacks.

When a patient plans - mast cells laugh.

I threw myself into research trying to learn how to adopt a low histamine diet, clean my air and change my body care and cleaning products.

I (falsely) assumed that if I made enough changes - sacrificed HARD enough - I wouldn’t have to deal with flare ups.

It was exhausting. Many of the changes DID help. A low histamine diet, cleaner air, a proper med and supplement schedule and non toxic cleaning products all helped to reduce my overall “bucket” so that my symptoms were less severe.

The problem was - I continued having attacks. From minor attacks to full blown anaphylaxis - no matter how much work I put in the attacks didn’t stop.

It was incredibly frustrating - and I began tracking everything I ate, used or did in an effort to find patterns.

In the end I realized that sometimes - there are no answers. “Putting in the work” doesn’t guarantee you won’t have attacks.

It’s a help - and we should do whatever we can to minimize our symptoms - but chronic illness (and especially MCAS) doesn’t care about your plans.

I had to learn to let go. Constantly blaming myself, over analyzing every situation and trying to nail down exact triggers was exhausting me.

It wasn’t helping my physical health and was destroying my mental health

At a certain point - we have to accept that chronic illness can be wildly unpredictable - and flares are NOT our fault.

Setbacks happen - and the best thing you can do is give yourself grace and remember that the pain WILL pass.

This applies to Covid as well. I see far too many people who are covid cautious being blamed for their infections. Being grilled as to what their exact precautions were as people try and exploit a perceived weakness somewhere.

This isn’t helping.

If you’re masking and doing everything you can do to avoid covid - you’re doing a great job. If you got infected anyways - that’s the fault of our institutions and governments who’ve allowed the virus to run rampant and encouraged people NOT to take precautions

Just like we have to let go of trying to find every possible trigger for our chronic illness - we have to let go of the blame when people get infected with Covid.

Blame, shame and guilt aren’t helping anyone - and they aren’t good for your health.

To be clear - “letting go” doesn’t have to mean giving up. It doesn’t mean you stop trying to improve your health or stop mitigating for COVID.

It simply means you stop fighting the reality that you’re sick. You lean IN to the conditions and try and find ways to accommodate

It’s a difficult thing to do. I’m still having to work at it every single day. But it’s worth making the effort.

Society, HCWs and even friends & family can be cruel to those with chronic illness - we don’t need to be cruel to ourselves.

Which brings me to my third and final article in my series on living with MCAS - Learning to Let Go.

This post explains how I learned to be kinder & gentler with myself and accept that setbacks WILL happen and they’re not my fault:

disabledginger.com/p/learning-…

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#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #MastCellActivationSyndrome #mastcells #histamine #lowhistaminediet #mastocytosis #anaphylaxis

Misogyny in medicine is focusing more on what a man might WANT than what a woman NEEDS.

I NEEDED a hysterectomy and was told I wouldn’t survive pregnancy.

“Informed consent” for surgery looked like this:

“Don’t you want to be a Mom?”
“You may want BIOLOGICAL children”

“What if you meet a man who wants babies?”

“What if he leaves you because you can’t bear his children?”

“Men went their OWN babies - what if you can’t do that?”

“You will feel like less of a woman.”

Brought boyfriend in to try and change their minds. Them to him:

“Will you still love her if she’s BARREN?”

“Do you want kids?”

“What if you change your mind & want kids - will you LEAVE her?”

Him: “Save her life what I want doesn’t matter” (he understood the assignment)

The assumption through the entire process - as I got sicker and sicker - was that I should WANT to risk my life for the CHANCE to bear a child.

That if I didn’t WANT that - I would change my mind when I met the “right man”

Apparently the “man of my dreams” will be so spectacular and the love so all consuming that I will be all too happy to put my life on the line to give HIM babies.

Needless to say I found that incredibly offensive. I was dying. I was incredibly sick. I needed surgery.

This is NOT “informed consent”. This is misogynistic and patriarchal bullying.

Informed consent would have been ensuring I knew it wasn’t reversible and would mean I could never have children. Letting me know risks of complications. Risk of prolapse. Risk of early menopause

None of that was covered. It was ALL about men and babies.

I actually did have a severe post operative complication that I was woefully unprepared for because “informed consent” failed me.

We must do better. Women need autonomy over their body. Inform us. Work with us.

Don’t put the needs of a man before of our own. Don’t treat us like incubators.

We are MORE than our ability to bear children. I lost my womb at 24 and I’ve never felt like less of a woman, less of a person. I’ve never regretted it.

Medicine needs to do better

One of the worst parts was that when I ended up having a complication - I was gaslit & ignored again. Told I didn’t know my body AGAIN. I needed my boyfriend to get them to even run tests.

Now - decades later - I’m still dealing with issues from the surgery and complication.
I can never know how different things might have been had they acted faster - but I DO know I was never able to fully trust the medical profession again.

My article on this is below - and I’m working on a future one about informed consent (or lack thereof)

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disabledginger.com/p/my-most-d…


#reproductiverights #reproductivehealth #prochoice #womensrights #womenshealth #misogyny #patriarchy #obgyn #hysterectomy #tuballigation #endo #endometriosis #chronicillness #mybodymychoice
#fuckthepatriarchy #ableism #discrimination