Thread by @jenna_payne

I see a lot of abled people focusing on single pronged approaches to this pandemic, and I am begging you to consider the chronically ill & immunocompromised who lost more than you can imagine pre-pandemic & just keep losing. Read on:

Background: In 2016 two things happened, my apartment began to leak, unbeknownst to me feeding a years old mold & mycotoxin colony in our ceiling, and I was given a pneumonia vaccine to see if my immune system was working. It wasn't, and I had full-blown pneumonia in 3 days.

I wasn't diagnosed with anything meaningful until 2018, and in between, I nearly lost my ability to walk, I lost my career and ability to leave the toxic home that was slowly killing me, and the cost to my finances just continues to accumulate.

I think I went out socially less than 5 times from when my spine caught fire Memorial Day weekend 2017 to the next year's Memorial Day. I completely disappeared from my own life. My Dxs: Ankylosing Spondylitis, #hEDS/Ehlers-Danlos, Hashimoto's, viral issues, endocrine, etc.

I spend about $20,000 every year on my health. I cannot work full-time anymore and probably shouldn't be working part-time. I have been trying to build my own production company so that I can work on my own time, at my own pace. I need a sustainable paycheck.

I have still been trying to write & direct in an industry that is built on ableism. I both decried the insistence on working yourself to death and participated in the ableism when I was healthier.

Federal disability doesn't pay much. You should get an attorney. Most people are rejected at least once. It's not recommended that you continue to work while waiting for your determination. I have not applied because I can't afford the wait and don't know my long-term prospects.

So I think you get the picture that my life was stressful, isolated, and subject to the whims of this uncooperative meat puppet I'm stuck in. But I had gotten better and could see my friends! Work a little! And then the pandemic happened....

I watched the news from China while I probably had #Covid19 New Years 2020. I had a fever for a week (my second since 2017! we stop having fevers!). My brain was not functional. My husband slept sitting up in a chair for a week with pneumonia & ended up in the ER twice later.

As the South & Midwest US opened up too early in late April and early May, I went to a dark place. I knew this was going to be endemic because public health messaging was failing us & the government couldn't assess the long-term cost of ongoing plague. (Masks work, people!)

I knew I could not work in an office again. I could not go to the movies again. I could not eat in a restaurant. Nothing that I loved would be safely available to me in this new world. I was beside myself.

My husband's job fortunately went permanently remote in June of 2020, and we immediately made plans to leave LA, our friends, our lifestyle & try to buy a house for under $150k. We were lucky to succeed in that after many false starts, stresses, etc. that's its own thread.

I have to exist in the world - just like you. I have doctor's appointments, grocery shopping, and a desire to see actual people every once in a while. I have been diligently wearing a mask since March 2020. I wear a face shield on top of it in high risk situations.

There was a scare last year when we were staying with the in laws. I got a sore throat and immediately quarantined myself - to major discomfort - in my bedroom. I wore a mask if I had to go to the kitchen. I got a Covid test. I am taking this very seriously.

So many people who can conveniently pretend like there are not millions of Americans with immune dysfunction - autoimmune disease, cancer, #MECFS, etc., etc. - are not taking us into account in your risk assessments & compliance with public health best practices.

Best practices include vaccinates if you are healthy, and we should be wearing masks, testing at any sign of illness, and quarantining if you might be carrying #Covid19. Masks are very effective! We should be talking about mandates (with alternatives for those who can't mask).

The Pfizer jab is only about 40% effective in keeping you from contracting Delta. That means your summer cold could be mild covid, but you could spread it to me or someone who just had a lung transplant. It's not enough. forbes.com/sites/robertha…

CW: suicide
I have not & will not take the vaccine since my last experience w/a shot partially triggered my crippling arthritis. I have spent too much money & lost too much time. I spent a significant portion of 2017 & 2018 thinking about ending it. I can't live that long-term.

In contrast, there are many chronically ill patients who experienced an overall improvement after their vaccines. Still, there are those like me who have lost their baseline and backslid significantly. A big contributor is one dose fits all medicine: healthrising.org/blog/2021/07/1…

I had to weigh my own pros and cons. Ultimately, the chances of me producing antibodies does not appear to be high and is not worth the risk of triggering my faulty immune system. Chronically ill patients should be trusted to make their own decisions here. cnn.com/2021/07/16/hea…

We should not be expected to live our lives at home, and we're not able to do that. Public health should not be only for the healthy - especially with a virus that is still causing long-term chronic illness like mine. Believe me, you don't want #LongCovid. theatlantic.com/health/archive…

So think of the complex chronically ill who spend more time, money, and energy on their healthcare than you can imagine. Whose lives don't look like yours. Wear a mask. Be cautious & quarantine if you might be a vector. I deserve a life worth living too. #NEISvoid

And think of us when you lobby for vaccine mandates with no alternative process for the chronically ill, the contraindicated, etc. I now have 3 doctors that agree I should not risk the shot, but I didn't have any for 3 years after my adverse reaction to the pneumonia shot.

@threadreaderapp unroll please!