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:

https://www.disabledginger.com/p/learning-to-let-go-how-to-accept

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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

This was hands down one of the hardest articles I’ve ever had to write - my plea to maskless healthcare workers from vulnerable patients.

I’ve dedicated it to @Tinu - a Long Covid patient and disability advocate who passed away three weeks ago.

She had cancer - and the healthcare workers treating her refused to mask.

This MUST stop. Patients both need and deserve protection.

You CHOSE to work in healthcare. We didn’t CHOOSE to be sick. We would rather be anywhere other than the hospital.

We need you to help us get better - which is virtually impossible when you’re constantly exposing us to a deadly and disabling virus.

Toni’s first Covid infection left her completely disabled - and then she developed cancer as well. How callous do you need to be to refuse to mask for someone like her?

I hope my article honours her memory - as well as encourages healthcare workers to think a bit differently. It’s not about YOU and whether you feel you’re at risk. It’s about your patients who ARE at risk.

We need you to do the right thing - mandate or not. Do it for Tinu. Do it for me. Do it for all your patients who are scared in your care. Do it for the next generation who needs us to protect them. Put the mask on.

https://www.disabledginger.com/p/a-plea-to-maskless-healthcare-workers

#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 #fortinu

I called EMS once and police showed up before paramedics (paramedics were busy).

The first thing they said? “You don’t look sick.”

They waited for paramedics who took me to hospital - but that initial response stuck with me.

It’s why mask bans are dangerous. Police aren’t trained to make medical decisions. They shouldn’t be the ones deciding who can and can’t legally wear a mask.

Many illnesses are invisible - you wouldn’t KNOW we’re disabled to look at us.

Most of us have experienced gaslighting from friends, family and even doctors - people are quick to judge and decide you’re “not that sick.”

So are we really expected to risk criminal charges by wearing a respirator & just HOPE police will believe we truly “need it”?

Not to mention that medical exemptions leave behind anyone who wants to mask to protect and preserve their health - as well as caregivers and family of disabled people.

We rely on them to keep us safe - we NEED them masking in public.

I sincerely hope more people join the fight against mask bans soon - because if we don’t fight against them - more cities and states will pass them and more people will suffer.

A good respirator is excellent protection against covid & other illnesses.

We shouldn’t be further excluding disabled and high risk people from public - but that’s exactly what these ugly laws do.

Call your elected officials - tell them medical masks can not and should not be banned.

Don’t embrace escalating fascism and eugenics just because you don’t think it will impact you.

Don’t celebrate it because you hold a grudge about mask mandates.

It won’t stop with disabled people. Help us now & your future self will thank you.

My full article on mask bans, medical exemptions and how we’re witnessing (and even welcoming) escalating eugenics and fascism: https://www.disabledginger.com/p/we-are-witnessing-real-time-eugenics

#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 #bullying #CleanAirClassrooms #UglyLaws