One of the most devastating parts of the pandemic has been watching pregnant women not taking any precautions.

As someone who was a sick child - I worry about kids born with complications from in utero infections & then thrust into a world that won’t protect them at all 🧵/1 The science of COVID’s impact on sperm, developing fetuses and the placenta is pretty damning. We know it’s a significant risk to the health of the baby AND that having Covid during pregnancy puts the mother into the high risk category as well. /2

“If you were really THAT sick you’d be:”

In hospital
Have full time care
Be getting ‘fixed’
Trying harder
Getting financial help
Dead

The list goes on & on.

We ARE that sick & none of these options apply because our systems are broken & ableism is rampant. 🧵/1 I’ve known for a long time that ableism runs deep in society. People have forever viewed the disabled as “less than”. Many view our disabilities as our own fault - a moral failing. Others would be perfectly fine excluding us from society forever. /2

As someone who was sick with invisible illness as a child - I’m worried for this generation of children.

Kids WANT to play. They WANT to socialize. They usually WANT to go to school.

If your kid doesn’t want to do these things - there’s a good chance they’re sick /1 🧵 I sometimes feel like the only group of people who are gaslit and disbelieved more than disabled people are children. They have no agency in their lives. They need to be protected by the adults in their world - and yet many aren’t being protected. /2

To all the disabled & chronically ill people suffering in silence right now - needing the ER & being too afraid to go - I see you. I’m with you. I’m sorry that safe healthcare is so hard to find.

To everyone else - you won’t be the exception. Help isn’t coming. 🧵/1 The sad reality is that this isn’t new for disabled, marginalized & chronically ill patients. ERs have never been a very safe place for us. The decision of whether to go is fraught with challenges - a careful weighing of whether we will come out worse than when we went in /2

A friend of mine managed to avoid COVID until this winter - when she was infected in a healthcare setting. She’s not recovered. She’s showing signs of Long Covid & POTS.

Spent last 3 weeks being worked up for cardiac issues - no one masked for her. Then she landed in ER /1 🧵 She had been dealing with nausea, vomiting and diarrhea for 4 days and had become tachycardic with a heart rate of 140. She was unable to keep fluids or electrolytes down & running a fever. But the way she had been recently treated was dissuading her from getting care /2

Recently I’ve written a lot about how I manage my POTS & MCAS triggers… as well as how to improve quality of life when chronically ill.

But what to do about the triggers you CAN’T control? Things like temperature, barometric changes & the mother of all triggers… stress? 🧵/1 If you’re dealing with chronic illness - it’s important to mitigate triggers wherever you can. But it’s equally important to recognize that there are some triggers you can’t control. /2

As more States attempt to enact mask bans - we need to take a critical look at what these bans mean for disabled people, marginalized individuals, POC and more. They will have devastating consequences for many & send a dangerous message that the pandemic is over (it’s not) 🧵/1 @dontwantadothis has written an incredible essay that does a deep dive into this issue. It’s a comprehensive analysis of how we got here - and I hope everyone reads & shares. Here’s just a few important snippets. /2

I recently wrote about chronic illness and grief - as well the stages of deciding when to go to hospital.

It was disheartening (though not surprising) that so many disabled people are at the “I won’t go unless literally dying” stage.

My tips to make ER trips easier 🧵/1 When you’ve dealt with chronic illness for a long time - you learn not to go to the ER unless you think you might actually be dying (and sometimes not even then). You learn to endure unimaginable amounts of pain and suffering without medical care. /2

When you have a complex chronic illness - you often go through the 5 stages of grief while you mourn the loss of your health & previous lifestyle.

Those stages are straightforward - but the stages you go through learning when to seek medical care are far more jarring. 🧵/1 In stage 1 you generally go to the ER for most symptoms. You’re scared and need help. Your body doesn’t feel right. You go assuming they will help you.

If you were healthy previously - your expectation of the hospital is that you go in, they fix you, you go home. /2

I’m seeing a lot of people newly diagnosed with MCAS (mast cell disorders) drastically altering their diet to a low histamine one.

It’s an important step - but don’t overlook things like indoor air quality, skin care & other triggers.

🧵 of ways I keep my mast cells happy /1 Indoor air quality is the biggest issue for me. Even the best diet can only do so much if your air is full of triggers. Pollen is a big issue for people with MCAS - but there’s tons of others. Chemicals, scents, smoke, VOCs from cooking… they can all cause symptoms /2

As we hear more stories of HCWs refusing to mask for compromised patients - I want to ask people to consider how it feels to BE that patient.

To feel like your life doesn’t matter & you’re a burden.

I’ve been that patient & wouldn’t wish that feeling on anyone. 🧵 /1 If you’re sick enough to need the hospital - you can’t “just stay home.” There’s an imbalance of power that occurs in healthcare that we need to do a better job of acknowledging. The patient NEEDS the services being provided & therefore has no power to make requests for masks /2

I’m devastated by the number of people celebrating mask bans because they see them as just punishment for mandates.

It’s faulty logic that will lead to more death & disability as we go warp speed into era of eugenics.

As someone who masked before the pandemic - I’m scared 🧵/1 Let’s deal with the elephant in the room first - the idea that this is a justified course correction for people who disagreed with mask mandates. Its not.

When we look at a law or a mandate we must consider the intent behind it & the balance of harm to general population. /2

A few weeks ago I wrote a thread about North Carolina’s proposal to ban medical masks & remove the existing medical exemption.

I was concerned they were removing it as strategy - so they could put it back later & act like they were doing the disability community a favour. 🧵/1 “Later” has arrived. The Senate passed the revised bill with incredibly problematic language. It “allows” medical masks for the purposes of avoiding spreading a communicable disease. It permits medical & surgical masks … we don’t know if respirators like P100s will be allowed /2

Denying the severity of Covid & how it’s transmitted has devastating consequences - especially for children.

I’m reminded of a prominent AIDS denialist who let her 3 year old daughter die and narrowly escaped felony charges.

A 🧵 on denialism & how it can literally kill. /1 Christine Maggiore was a high profile AIDS denialist who was HIV positive but believed the virus didn’t cause AIDS. She blamed the HIV medications - and as a result refused to take them while pregnant and breastfeeding her children. /2

POTS has significantly impacted my quality of life. It makes seemingly simple activities nearly impossible & causes crushing fatigue.

I’ve had a number of bad falls & faints that have left me injured - and as a result have learned many tips & tricks to keep myself safe 🧵 /1 Dysautonomia is an umbrella term for conditions that cause malfunctioning of the autonomic nervous system - which is the system that controls all unconscious processes. Things like breathing, blood pressure, heart rate & temperature regulation. /2

PSA for Long Covid folks experiencing mast cell issues for the first time - anaphylaxis is not JUST airway issues. Anaphylaxis can impact all major body symptoms & you can be having an attack with NO skin or airway involvement.

My anaphylaxis is almost always cardiac & GI 🧵/1 I find that many people (including some HCWs) still associate anaphylaxis with throat closing and hives/rashes. While that may be the typical presentation (especially for food allergies)… patients with MCAS are anything but typical. /2

Grateful to this nurse for speaking up about risks that patients (and HCWs) face in a world that’s abandoned infection control.

Imagine being the immune compromised patient getting treated by a HCW who’s clearly unwell. It’s frightening, unsafe & you have no good options /1 🧵

https://twitter.com/1goodtern/status/1794745117141500384

If you’re sick enough to need the hospital - you can’t “just stay home.” There’s an imbalance of power that occurs in healthcare that we need to do a better job of acknowledging. The patient NEEDS the services being provided & therefore has no power to make requests for masks /2

This time of year is awful for MCAS & POTS patients. While everyone else enjoys the end of a long cold winter - pollen & grasses fill our histamine bucket and warmer weather strains our hearts.

I know it’s Spring when I start having middle of night attacks

🧵 on how I cope /1 First of all MCAS isn’t limited to “just” histamine. These pesky cells contain hundreds of mediators that can wreak havoc in your body. Histamine just happens to be the one that’s most well known. It also happens to be the one that loves nighttime parties. /2

Being disabled & chronically ill is beyond lonely. Far too many people in society can’t comprehend illnesses which are permanent & unrelenting but don’t necessarily kill you. As a result they EXPECT you to get better.

When you don’t - they abandon you.

🧵/1 People understand illnesses like cancer - you get sick & get better or you die. They can support & empathize with that.

When it comes to chronic illness … that support & empathy dries up. The idea that someone could be sick FOREVER & not die is too much for people /2

It took me years to admit I was disabled. I was scared of judgement & discrimination.

But even my worst fears didn’t come close to what I feel now. I’ve never been more scared & it’s not fear of covid. I’m afraid of the rise of eugenics, anger & where society is headed. 🧵/1 I’ve known we live in an ableist society all my life - but I underestimated the depth of hatred & lack of empathy. The pandemic ripped masks off people & revealed their true selves & far too often the “true self” was someone who couldn’t care less about helping fellow humans /2

I want to remind people that disobeying mask mandates was NOT a criminal offence. It put lives in danger but was never a crime.

North Carolina are attempting to make wearing a respirator to protect yourself (and others) a crime. Everyone should see how wrong this is /1 🧵 Masks were treated similar to “no shirt, no shoes, no service”. If you didn’t wear one into a public space you were asked to leave. If you refused you MAY have been charged with trespassing. But the lack of mask was NOT the crime. /2