I remember so clearly receiving the phone call on August 24th that both of my children and my ex-husband were Covid positive. The first thought that crossed my mind is – I am going to die. I imagined being locked in a zero pressure hospital room with nurses and doctors in PPE caring for me while I fought for my life and my husband looked on through the window of my room because his role does not allow him to enter.
I have two autoimmune diseases and take immunosuppressant medicines. I had no idea what to expect so death seemed like a reasonable conclusion. In fact, the entire time the virus swirled around the country both my daughter and I fought raging anxiety regarding how it would effect us if we got sick.
We have been able to collect a decent amount of data thanks to rheumatologists around the world. It appears autoimmune patients are not being hospitalized at any greater rate than the general population. The New York Times shared some promising information regarding the possibility that the immunosuppressant medications might actually provide a prophylactic against the virus.
But I won’t forget that day, frantically driving around to find an available test thinking, “I am going to die”… and then I didn’t. I am now curious how many of us that went into Covid infection with autoimmune diseases are suffering long haul symptoms. I have some ideas of how to collect some information and stories that need to be told. I’m glad to be a voice for the silent.