Thread by @leticiasaurus, Yesterday was my #covidversary. It's been one yr since my partner @israelfloresta [...]

Yesterday was my #covidversary. It's been one yr since my partner @israelfloresta & I got covid19.

We both tested negative. Now, we both have #longCOVID.

Here are some thoughts about this experience

#1year1virus
1/

I have a PhD in biology, I work with infectious diseases and I have done thousands of PCRs in my lifetime.

Yet, processing the implications of a (-) test while being ravaged by brain fog was humbling to say the least.

#1year1virus #longCOVID
2/

We had access to testing early on because I was fully symptomatic and @israelfloresta was an essential worker. By the time we received the test result and it was (-), we were both getting worse. Our symptoms were dismissed and we were declined a 2nd test.

#1year1virus
3/

It was so isolating to test negative and have symptoms that were neither acknowledged nor publicized as covid19 symptoms.

So many of these symptoms are now acknowledged by data sampled by patient led research @patientled: https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2

#1year1virus #longCOVID
4/

Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact

Objective To characterize the symptom profile and time course in patients with Long COVID, along with the impact on daily life, work, and return to baseline health. Design International web-based...

https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2

The (-) test, and the plethora of systemic symptoms that waxed & weaned simply crumbled my mental health.

I wrote this in my symptom journal: "Bouts of feeling a bit better which give me false hope and make me feel paranoid when start feeling bad again." 5/

Bc we tested (-), we were left to navigate covid19 alone. We still have to convince primary care doctors that our symptoms are real and need to be addressed.

I know that our situation isn't unique, yet symptomatic patients that test (-) are being ostracized. #1year1virus 6/

It's widely known that test sensitivity isn't perfect and that false negatives are not only possible but expected.

However, getting a (-) test meant that I was met with endless questioning of my experience and outright denial of my reality.

#1year1virus #longCOVID
7/

As a biracial immigrant in Canada, having #longCOVID w/ a (-) test means that I have been met with so much medical racism in form of overt discrimination or dismissal.

I had to see 3 MDs before getting prescribed something to treat bilateral eye inflammation.

#1year1virus
8/

This experience has absolutely no silver lining. Having #longCOVID for a year under these circumstances mean that we grapple with so much anger. It makes me furious to think of @israelfloresta having to work in the 1st wave, when masks weren't even mandatory. #1year1virus
9/

We are sick because one of us was an essential worker. We are sick because the state failed us. We are sick because of capitalism.

We have all reasons in the world to be angry.
#1year1virus #longCOVID
10/

At home, @israelfloresta & I talk a lot about acknowledging these emotions, the anger, the feeling of betrayal, the loss of independence. It helps us expressing these feelings so they can pass. There's a lot of crying around here and that's totally okay.

#1year1virus
11/

This is not easy to share. However, others before me have shared their experiences, which has been a great source of validation and comfort. I'm specially thankful to @chiluvs1, who was among the 1st to speak up about this.

#1year1virus #longCOVID
12/ https://www.washingtonpost.com/technology/2020/10/01/long-haulers-covid-facebook-support-group/

Covid ‘long haulers’ have nowhere else to turn — so they’re finding each other online

Often dismissed or misunderstood, long-haulers, who have been experiencing covid-19 symptoms for 30-plus days, have forged connections over Facebook and Slack.

https://www.washingtonpost.com/technology/2020/10/01/long-haulers-covid-facebook-support-group/

Everything we've accomplished in terms of symptom management, care and rehabilitation is thanks to @itsbodypolitic and @MEActNet.

We're alive today thanks to the advocacy and support from other covid #longhaulers, #pwME, & the disability community.

13/
#1year1virus #longCOVID

Public policy, medical practice, research studies , and society in general, need to acknowledge that false (-) tests arent' rare. Bc covid19 disproportionally affects BIPoC communities, failure to do so represents a significant barrier in health care access ppl w/ #longCOVID.
14/

I don't know if I will ever get my health back. But for as long as my body allows, I will continue to be vocal about #longCOVID, including in my professional capacity as a scientist and educator.
#1year1virus

Plz follow @longcovacademia

https://twitter.com/longcovacademia?s=20

15/

https://twitter.com/longcovacademia?s=20

You can follow @leticiasaurus.

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