Thread by @julialmv

One year ago, I was shocked to realize I had lost my senses of taste and smell. We had been so careful.

I’d like to share a bit about my experience with #LongCOVID, 4 things I’m grateful for and a few ways you can help: 1/14

The scariest part was struggling to breathe. I (finally) made a will. Throughout week 2, I wondered whether I would wake up if my oxygen saturation dropped in my sleep. Thankfully, my oxygen levels stayed high enough to avoid hospitalization. 2/14

One year in, I have debilitating fatigue and near-constant headaches and chest pain. Showering is a major expenditure of effort. Before this, I could easily run 3 miles even if I hadn’t exercised in months. 3/14

I’m one of the lucky ones. It’s easy for me to get out of bed. I continue to work, because my work allows me to sit all day.

I’m doing as well as I am thanks to the following people (and many others – you know who you are): 4/14

1. My partner turned caregiver.

He took care of everything during the acute phase so that I could focus on breathing. Every day since, he’s made it possible for me to rest much more than normal. Caregivers are quiet heroes. 5/14

2. Countless advocates.

Writers like @fi_lowenstein and @edyong209 who legitimized my symptoms for my loved ones, (some of) my doctors, and even myself.

Those who created the post-COVID CDC guidelines - they'll improve doctor-patient interactions. cdc.gov/coronavirus/20… 6/14

3. The @itsbodypolitic support group.

I cannot overstate the value of connecting with others going through this disorienting experience. I shudder to think where I’d be without them.

Early on, stories of recovery filled me with hope. 7/14

Next, you educated me on practical strategies to manage symptoms.

All year, it's been amazing to have a community that “gets it”, from being told all your symptoms are due to anxiety to celebrating having the energy to dance, momentarily. #1Year1Virus 8/14

4. My employer (@scrippsresearch) and team (@scrippsDTC).

I'm grateful to our whole team for giving me time to recover and valuing my patient experience when we discuss Long COVID research. 9/14

While I’m grateful that these caring people made the past year bearable, there’s no clear path to alleviating the chronic disease that millions of us struggle with daily.

I invite you to consider the following ways to share your time and information and/or money. 10/14

1. Sharing time and information

When I consider this experience in the broader context of health and disease, it furthers my commitment to working on and participating in #JoinAllofUs. 11/14

We’re partnering with participants who represent the U.S. and democratizing researcher access to a vast dataset.

You can help advance research with the goal of decreasing suffering across diseases.

Learn more about how you can contribute at: joinallofus.org/go 12/14

2. Sharing money

These underfunded stars would love your support:

@itsbodypolitic – LC support group gofund.me/ee80bb1d
@patientled - volunteer LC researchers gofund.me/b0147915
@chiluvs1 - LC advocate for urban communities & amazing human Venmo: Chimere-Smith-2 13/14

I hope the year ahead includes:

For the world:
Fewer COVID cases, Long COVID cases, & deaths

For the #LongCOVID community:
More patience & understanding from loved ones & health care providers
More effective treatments

For me:
More energy, fun, & dessert
14/14