Thread by @ChantalBritt

On Monday it's 2 1/2 years that my life has been turned upside down by #LongCovid. I'm now chronically sick with a disease which can't be treated. I have lost my job, I can no longer run or train for marathons, and I struggle with cognitive dysfunction and #PEM/#PENE.
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I had no precondition, had a normal BMI. have never had a sick day in my life. I've been to hospitals to give birth to 3 children and after injuring my knees playing handball, volleyball, squash and tennis. I didn't even have a GP for many years because I was never sick.
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#SARSCoV2 infection on 6/3/2020 changed my life's trajectory. Lucky to be "mildly" affected, so I could help build @LongCovidCH. #Myocarditis, tachycardia, dysautonomia. Unable to function & too sick to hold down a regular FT job, but not sick enough for disability benefits.
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It took me 1 year 3 months to get the diagnosis #PostCovid, a process which was so traumatic that I will be a patient advocate for the rest of my life. The stories of fellow sufferers with chronic diseases like #MECFS have changed me forever.
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We patients must make our voices heard to explain what our needs are, which symptoms are debilitating, where research needs to find solutions.

My mother died of inoperable colon cancer in April 2021 in her house in the South of France. I helped make it possible that she was able to stay at home and die in her own bed with dignity and grace the way she had lived for 80 years.

There was a lot of sickness around my family over the past years, and we lost close friends to cancer and heart disease. A relative in Sweden died of covid at the age of 59. All the people struck by sickness and killed by disease were women.

I believe most of them died because their disease or suffering was not recognised, discovered too late, not prevented, ignored, played down or neglected. Yes, I believe it's also partly due to the fact that they were/are women. The book "Unwell Women" has influenced my judgement.

One died of a heart attack that was played down as summer flu
one died of cancer after never having had a colonoscopy
One died of leukemia. Her pain was excruciating
one died of covid because she wasn't allowed to wear a protective mask as a nurse

A teenager weighing 36k developed a stutter, couldn't walk and collapsed after she was given adult doses of sertralin for two weeks because of a "medication error" (her asthma drug also started with "s"). She was never informed about and didn't consent to the drugs she was given.

A teenage girl suffered from pain in her leg. She was diagnosed with cancer and had her leg amputated. She and her family are suffering physically and mentally. She is lucky. Another friend lost their son to cancer. And all the chronically sick children @LongCovidKinder.

Witnessing all this suffering due to neglect and misogyny, I have vowed to dedicate the rest of my working life to being a patient advocate for chronic diseases such as #LongCovid and #MECFS (and all the syndromes connected).

I'm lucky I'm able to work part-time and that my partner was able to move to a full-time job. This freed me to accept a position where I can conduct research, moving a bit away from science communication and journalism. And I'm lucky to have family and friends supporting me.

It will be a long battle to get #LongCovid and #MECFS recognised as physical diseases, to have medical faculties teach about post-infectious conditions & to build competence centres with specialists assuring long-term care & support & cohorts for clinical research. My 10Y Goal.