If you’re dealing with a COVID infection - remember it’s NOT your fault.

Those of us trying to avoid COVID & break chains of transmission have been failed by governments & public health. We’ve been left by the wayside.

It’s hard to avoid when NO ONE else is even trying.

I’m always sad when I see people blaming others for getting covid (or worse - blaming themselves).
There’s only so much a single person can do when covid is everywhere and most people refuse to acknowledge it (let alone mask or stay home)

This is extra applicable if you have young children or work in a public facing role where you’re exposed to large numbers of people every day.

When the collective whole gives up & decides to accept constant infection & reinfection - it becomes harder for those of us still trying.

Remember that every infection avoided or delayed is a win. The less times you get COVID - and the lower your viral load - the better.

Don’t give up - and never forget that if you’re masking - you ensured you didn’t pass your Covid infection to someone else.

You did the selfless thing. You protected other people. You made sure to NOT be responsible for someone else’s death or worsening disability.

That alone should make you feel proud - and negate any potential feelings of guilt or blame.

We need to do more to lift each other up and support our allies in this fight - because we don’t have many left.

Share advice, provide encouragement and don’t shame people when they get sick.
Also - can we stop shaming people for their choice of mask?

I see a lot of judgement towards people wearing surgical masks and/or earloops.

I consider anyone in a mask to be a win. These are people who are reachable - who would likely welcome information on how to better protect themselves.

They’re TRYING to do the right thing. We’ve been fed a steady diet of misinformation or no information for years.

If you’re involved with the Covid cautious community here - of course you know a surgical mask provides little protection.

But not everyone has this information - and many don’t have the time or the inclination to go hunting for it.

There’s also the matter of cost. Respirators are more expensive. Head strap and elastometrics cost even more.

Many people can’t afford a high quality mask - especially if they have to be out of the home 8+ hours every day

I’m incredibly grateful for my N99 respirator but will readily admit the only reason I can afford it is because of how little I leave my home.
I couldn’t afford to wear one every day. Covid IS a social justice issue.

So what can we do about it? Lots of things! If you have the means to carry extra N95s - offer them to people you see in a surgical mask. Tell them why a respirator offers better protection.

Find and support your local mask bloc. Donate masks if you can.

You can also donate tests to people who can’t afford them. Share or donate to people trying to raise funds for at home NAAT testing so they can keep themselves and their communities safe.

Keep pushing for mandatory masks in healthcare, free respirators and tests and clean air in all public spaces.
Educate people who want more information on how to keep themselves covid free.

Lastly - support your allies in this fight. Lift them up and be cognizant of their energy levels.
Don’t tear people down unnecessarily.

We’re almost five years into this and people are rightfully exhausted. We need to stick together in order to face another year

If you’re struggling and need advice on how to up your mask game, how to find a mask bloc or charity or just need support to stay covid safe - feel free to leave a comment .

Lots of informed people here who can help you find the best protection for your individual circumstances!

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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“You could be doing more.”

“Is the pain really THAT bad? I’m sure you could get out of bed if you really tried.”

“Why aren’t you going to that party/dinner/event? Everyone thinks you’re lazy and antisocial.”

“Do you really need to stay home from work? You’re being lazy. Force yourself to go in.”

“Do you really need to go to the hospital? It’s not that bad - just push through.”

“See? The ER doctor didn’t even help you. It was stupid of you to go in. There’s nothing wrong. Just try harder.”

This used to be my harmful inner monologue.

I’m sure all of us with chronic illness have said similar things to ourselves.

It’s incredibly hard to adapt to becoming disabled - and we often gaslight ourselves and push our bodies to their breaking point.

We run from reality.

It’s understandable - no one WANTS to be chronically ill. We didn’t grow up hoping to spend our lives stuck in bed dealing with unrelenting pain & fatigue.

Chronic illness can and does strike out of nowhere - catching you off guard and forever altering the course of your life.

Of course that’s a difficult thing to accept.

Often we have doctors, friends and family downplaying our situation - telling us to “just try harder” or that “other people have it worse”.

Who in the chronic illness community hasn’t heard “have you tried yoga?” Or “just be glad you don’t have X condition”?

The reality is people have a difficult time facing chronic illness. This doesn’t just apply to patients. Those who love us can struggle to accept it as well.

Watching someone lose their health is hard. Knowing there’s no hope of improvement? It scares people.

We understand acute illness. You get sick or injured, you rest and then you get better. Things go “back to normal”.

We also understand terminal illness. We are able to process a condition that will gradually get worse and then take your life. /6
Where we struggle is with chronic illness. Existing in the grey. People HATE the grey.

They find it hard to imagine that you could become sick with something that will completely ruin your quality of life - but won’t kill you.

They can’t imagine that the suffering could continue for months, years and even decades.

So they deny it. They minimize it. They tell us to try harder, think positive & play through the pain.

We internalize those messages - and before you know it - you’re doubting yourself.

I did this for years. Constantly telling myself it wasn’t really “that bad”. I just needed to try harder, exercise more, avoid the hospital, think positive etc etc.

It didn’t work. You can’t “try harder” your way out of chronic illness. It doesn’t work that way.

Society is already so cruel to people with disabilities - we don’t need to be cruel to ourselves.

It took me a long time to realize this. To let go of the blame and accept that I WAS severely ill. It wasn’t my fault, I hadn’t done anything wrong.

It was time to put the “coulds” and the “shoulds” to bed and find a way to move into a place of kindness and acceptance.

It was time to stop running from my illnesses. To stop trying to figure out every single flare. To stop putting myself down.

It didn’t come easy. In fact I still struggle every day.

But I’m putting in the effort. The amazing thing is the more effort I put into letting go - the happier I am.

Instead of wasting energy on blame - I’m finding ways to adapt & accommodate my diseases.

I’m managing to carve out moments of peace and calm - which when you’re chronically ill can be incredible rare.

Our bodies are unreliable - constantly throwing us curve balls, flares and setbacks.

We NEED the calm wherever we can find it.

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

I hope this article helps other people find their own path to acceptance, accommodation and peace:

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

Before you tell a disabled person that they need to “just make the healthcare worker mask”… please understand the imbalance of power that exists in hospital settings.

We can’t “just make them” do anything. If they refuse -our options are to take the risk or go without care.

There’s little recourse when a HCW refuses to mask - there’s almost NO recourse that exists in the moment.

You can file a complaint after the fact - but if the care you require is urgent or an emergency - that won’t help you

Imagine you’re taken to the emergency room with an urgent (or life threatening) issue. The doctor comes in and refuses to wear a mask.

Do you walk out? Throw a fit? These are not good options

Even if you manage to keep your composure and strongly advocate for them to reconsider - the longer you argue the more potential virus you’re being exposed to.

The more you “annoy” the staff - the greater the odds of retaliation or reduction in care.

This isn’t like telling a friend or a colleague to mask. The dynamic is completely different.

HCWs have the ability to help you or harm you. You want them on your side.

A note in your chart indicating you’re anxious, difficult, non compliant etc can follow you around and impact all your care going forward. Getting charts corrected and notes removed is a time consuming and difficult process

As a result many patients don’t push the issue. They delay medical care as long as possible and then just cross their fingers they will get a compassionate HCW when they do finally go.

These delays can also cause harm - and shouldn’t be necessary.

Hospitals have never been terribly safe places. They’re where the strongest and most resistant bugs thrive. They’re also where the sickest and most vulnerable people are.

At least before Covid it felt like hospitals were TRYING to prevent infection.

These days it’s as though any amount of infection control is seen as weak. People are actually bragging about how many times they’ve had Covid or about the risks they’re taking with their health. Staff aren’t masking even around babies, cancer & transplant patients

We have to change course. Our healthcare systems could barely handle the amount of chronic illness they were facing before Covid - they certainly can’t handle the constant influx of disabled patients and staff that Covid is causing.

This is why we need mandatory masks in healthcare settings. The responsibility to keep themselves and others safe should NOT fall on the vulnerable patient.

Many are unable to advocate for themselves - and others are unable to mask.

Mandatory masking protects everyone

Lastly - the solution to this problem should not be “don’t go to the hospital”. It’s not right to make ANY patient feel like they’re wrong for seeking care. Like they’ve somehow “failed” if they end up with Covid.

Until you’re facing a life threatening emergency or serious health challenges - you can’t possibly know what you would do.

Is it scary to go to the hospital right now? Of course. Is it also necessary? Absolutely.

Patients should never be blamed for needing care or for being unable to get HCWs to mask. The system is failing us - we aren’t failing each other.

If you need the hospital - you have all my love & support. It’s impossibly hard - and I will keep fighting to make it better.

As long as hospitals refuse to do what’s right to prevent COVID (hello clean air & mandatory masking)… the onus is unfairly on the PATIENT to avoid COVID.

My guide offers tips to reduce your risk of hospital acquired COVID (and other HAIs)

https://www.disabledginger.com/p/how-to-stay-covid-safe-when-in-hospital

A study came out recently that showed a single COVID infection increases your risk of serious cardiovascular events for 3 years post infection.

That’s terrifying - but there’s a bigger discussion being missed.

That finding means a Covid infection makes you a “vulnerable”.

First off - the study didn't show that after three years your risk returns to pre-COVID levels. It's three years because that's all the data we have.

For all we know your risk never goes back to where it was before.

The increased risk factor was after ONE infection. Now I don't know about everyone else - but I don't know many people who are stopping at one infection.

Most have had it at LEAST three times - and because we aren't mitigating it at all - are getting it annually (or more frequently than that).

In time I'm sure we will see studies that make it clear how much risk reinfections pose - but if we know ONE infection raises your risk for three years - it's safe to assume multiple infections aren't doing your heart any favours.

There's also the fact that the increased risk applies even for those who had "mild" acute infections - once again proving that there really is no such thing as "mild COVID."

You may be asymptomatic. You may recover quickly. It’s still damaging your body in a myriad of ways.

"Only the vulnerable" need to worry.

Wrong again. The study showed that increased cardiovascular risk impacted everyone who had Covid - not JUST the vulnerable.

There's also decent odds you're now IN the vulnerable category because you had Covid.

Don't understand what I mean? Think it's fear mongering?

What makes someone vulnerable? Preexisting conditions, old age, compromised immune systems.
When a study finds an increased risk of severe cardiac issues - that means you have a comorbid condition!

That "increased risk" is because you now have cardiovascular issues. High blood pressure, narrowed arteries, increased clotting etc.

Congratulations - you're now one of the “vulnerable" for at least the next three years!

We've also seen a number of studies showing that COVID impairs the immune system. We even know it prematurely AGES you.

So you "feel" fine. You think you had a “mild" case. But the reality is you're immune compromised AND have cardiovascular disease.

You may actually be more "vulnerable" than disabled people like me who you look down.

Why? Because I know l'm vulnerable so I do everything I can to avoid COVID infections.
I'm not repeatedly stressing my body with constant reinfections. 1/2