Thread by @ahandvanish

A year ago today I had my first COVID symptoms, and I never recovered.

It feels fairly impossible to process what being sick for a year has been like, and what this year of watching #LongCOVID awareness and advocacy unfold has been like, but some thoughts: 1/

The first week of being sick was the easiest. I remember marking my calendar to donate plasma at the point I expected to be symptom-free, but that never came. The sirens in NYC were nonstop at that point. I watched my neighbors get taken away in ambulances. 2/

Every night from 2-4am the neighbor closest to my bedroom window had a coughing fit. It was so weird and horrifying to know we were all experiencing the same thing. In those days living in NYC was a horror show while the rest of the country had no idea how bad it was. 3/

After the second week, my symptoms got increasingly worse. I developed a cough and shortness of breath, but also debilitating headaches, tremors, phantom smells, numb limbs, tachycardia, tinnitus, and so many symptoms that wouldn't be talked about in the public for months. 4/

I truly thought the cognitive/neurological symptoms were degenerative for the first 4-5 months. I had three goals: 1) to see my family again, 2) to not die, and 3) to make it known to the public that severe neurological symptoms were happening to us. 5/

I am infinitely grateful to @itsbodypolitic & @patientled for giving me a concrete path towards #3 so early. By week 6 of my symptoms, we released the first report on #LongCOVID, which we used to communicate to the CDC, NIH, WHO, & other organizations worldwide by the summer. 6/

It isn't an exaggeration to say that until we released our second paper in December, every ounce of energy I had that didn't go to my basic needs or medical care was spent with these groups on #LongCOVID research and advocacy. 7/

I cannot describe what a gift @LisaAMcCorkell, @GinaAssaf, @herlifeinpixels, & @AthenaAkrami were, to work alongside them as I felt like I was losing my brain; they gave me an incredibly safe space that let me feel like no matter what happened, I could meaningfully contribute. 8/

I also feel grateful to have spent the year alongside a team that was also sick, which made it *so* much easier to ask for new needs, and implement them as values for the whole group, and be in an environment where health was valued first. 9/

I feel grateful to @fi_lowenstein and @itsbodypolitic, which grounded its values in the history of other chronic illnesses, and facilitated so much advocacy by learning from people who have navigated these systems before us. 10/

I feel grateful to the #pwme community who gave us *so* much of their time, to help us navigate everything from the grief of becoming disabled to disability benefits to the most important post-viral treatments like pacing. And so many thanks to @AlisonSbrana, specifically. 11/

Even though this has been an awful experience, I feel grateful to be going through it with such an enormous (& international) community. I have not felt really alone and I realize how lucky that is. #LongCOVID 12/

Things I didn't expect:

-to lose relationships with some family & friends who I'd had good, close relationships with
-how many people would be angry that I & others were talking about being sick, once #LongCOVID became known
-to be threatened & harassed for being sick. 13/

Once #LongCOVID started showing up in the news, I naively thought policy changes would happen much faster. Seeing thousands of people join support groups with the same symptoms has been heartbreaking, confusing, frustrating. 14/

At the same time, I also realize that going from a nameless phenomenon to $1.15 billion in #LongCOVID NIH funding in less than a year is unreasonably amazing for any illness, and I feel grateful for it. 15/

As for symptoms: some are better, many remain. Over the summer, @Craig_A_Spencer generously took time to talk to me about his own post-viral illness. His words resonated & made me realize there is likely no return to pre-COVID Hannah. This feels true:

https://twitter.com/Craig_A_Spencer/status/1303138017532694529

16/

Many things are still hard; driving is hard, real-time conversations are hard, writing is hard, anything with executive functioning/processing speed is hard. I get fevers from zoom calls, walking too much, loud noises, etc. It's weird & hard to communicate these to others. 17/

Today I gave myself the gift of canceling some meetings, but had a lovely & validating call with the CDC, then drove along the ocean with my partner. The month leading up to this has felt full of grief, so I was really surprised that much of today felt joyful. 18/

I don't know if I'm going to "get better" - that's hard to think about at this point. My focus is on understanding my new body, understanding the new ways my brain works, understanding the new ways friendships & relationships have to work, and helping research move forward. 19/

Thank you all so much for your kind words and messages. I’m sorry this resonated with so many of you, but appreciate your love and support ❤️ #1year1virus