17-21

I graduate high school and go off to college. I have a blast but can't quite nail down what I want to study.  After 3 semesters and 2 majors I drop out. I find myself at a horse rescue as a volunteer and work my way up to assistant farm manager. I get interested in mechanics and decide to go back to school for a degree in diesel mechanics. I also take up welding and become a machinist's apprentice. I work hard, have a lot of fun, and am really living life finding my way.

The rest is all a blur of misery.

I turn 22

I am excited about finally realizing I am in fact not only smart enough but actually really well built to begin a degree in mechanical engineering. I get super excited about this prospect and feel like I have finally figured out what I want to do with my life. 

I catch a bug in March of 2020 and get really, really sick, but not dying right now sick, I think. I get a bit better but plateau with serious shortness of breath, cognitive impairment, and exhaustion. I don't know what Long COVID is, I don't know if I even had COVID or if I am contagious. I move back in with my parents. No doctor will see me because I am not ER sick but I have COVID symptoms. 4 months later someone finally relents and I get an albuterol inhaler. I breathe for fun that night.

I only keep up because everything slows down, goes online, and I quit the job I love.

I turn 23. 

Things are improving ever so slightly. I take my albuterol every 4 hours like clockwork. I see a lung doctor who is incredibly useless. I see a holistic doctor who is expensive and totally useless. My classes move back in person, I move back out. I see an allergist who puts me on a medication that helps my shortness of breath some more. I am still maybe 50% of who I used to be on a good day. I can't process information well, I can't read well, I can't do anything outside of classes and even there I am not applying myself to learn. I am doing the bare minimum to try and get the grades I need. I manage to join the engineering club (I still need to beef up my resume) but it makes a dent in my health. I am living like I will magically get better some day.

I see many more doctors, all useless, but they all tell me they think I had COVID and this is all caused by that. I get a dream internship at NASA but am too sick for it really and do a lackluster job.

I am still short of breath. I am still living in a strong haze. I am drained of energy and punished after exertion. I spend every moment I can manage (and often moments I should be doing other things) lying on the couch spaced out. My feet turn dark grey/purple when I am upright but doctors brush it off. My heart rate and blood pressure are high but no one takes it seriously. I have a hard time focusing my eyes, and constant ringing in my ears. A doctor actually says "it seems like you are handling your symptoms well", not because I actually am but because he doesn't want to think about how he can't help me.

I turn 24. 

I push myself too hard and have to withdraw from some classes. I am still improving a tiny piece at a time but at a pace so small it is only visible looking back to the start.

I get a second dream internship, at NREL in person in Colorado.

It all comes crashing down. What I had been living was considered the 'mild' form of the disease I didn't even know about, and I was now 'moderate'.

For the first three weeks I am doing okay. Then the weekend of the fourth of July I am suddenly  20% worse. I switch my internship to virtual but from my lodging in CO. My performance falls off a cliff and I still wince to this day thinking about how badly I failed at that internship. I realize I need to move back in with my parents. We make an appointment with a well regarded doctor who specializes in infection associated diseases. I thought I could handle 2 online math classes and then I'd be back at it in a semester or two.

I am somehow even more impaired. I am somehow even less capable.

I turn 25.

I somehow end up on Twittter and start to learn what they don't teach in medical school. I have Myalgic Encephalomyelitis (ME or ME/cfs)  and comorbidities brought on by COVID. I start to realize there is a whole history of this disease. It's been cruelly neglected for decades. People have been bed-bound with it for longer than I have been alive. It is incredibly devastating and now tens of millions more are getting sick with it because of COVID. The cardinal symptom being a worsening of symptoms for days to weeks after, but offset from, any kind of exertion. How little one has to do to trigger this Post-Exertional-Malaise (PEM) depends on the severity. PEM can cause permanent harm and increase the severity of the disease in unpredictable ways. It explains so much of my experience thus far.

Between doctors appointments I try to hang on to a project with a small grant I had received but just straight up drop the ball.

I try many many things with my doctor and they all do nothing or make me worse. I am referred to a cardiologist for my Postural Orthostatic Tachycardia Syndrome (POTS) and dysautonomia. They tell me my ME is just POTS and he can cure me with a few months of exercise and meds. I ignore the exercise advice because I had already tried this... a lot... and made myself worse. He did not cure me, in fact he made me worse and gave me medical advice that could have killed me, all because he didn’t take me seriously.

After almost a year of this my doctor finally prescribes something that makes me severe. I go from having free reign of the house and the occasional short outing to only being able to leave my bed to go to the restroom.

I turn 26.

This doctor turns on me. Suddenly, according to her, I am not leaving my house because I am afraid to. She is the one who made me worse. She keeps me on the treatment that injured me and keeps hinting that I am actually better and what is keeping me sick is in my mind. I develop lots of food and environmental allergies the longer I am on this treatment. My Mast Cell Activation Syndrome (MCAS) has just become severe too. I end up stuck on an elemental liquid diet.

I stop seeing her and start searching around again. I find an incredible PCP in this mess who helps me figure out what injured me.

I start seeing another specialist who is happy to try many experimental treatments with me. I have made some small progress with him. I can eat some foods again. I can sit outside for a few minutes some mornings.

I am still mostly bed bound. I get up to use the restroom, take my meds, and brush my teeth (and sit outside when I can). My parents provide for me financially and cook, clean, and everything else for me. I eat in a reclined position. I am too sick to watch TV, the exertion of following the plot lines and the music causes me to crash. I can work on some small projects in small chunks if I space them out a lot. I have not seen my friends or extended family since I became moderate over 2 years ago.

I turn 27...

I don't think I've taken a full breath in 4.5 years. I don't remember what it feels like. I haven't had a clear thought in 4.5 years. I have felt drained and had dysfunctional energy metabolism for 4.5 years. My body has been incurring damage and doesn't have the energy or resources to fix it. I haven't had a single second where I felt rested or energized or anything but really sick for four and a half years. Four and a half years. And I honestly have no real hope of feeling substantially better anytime soon, even with all this privilege.

I should be graduated with a mechanical engineering degree, starting my career. I should be helping my parents. I should be seeing my friends and supporting them in their struggles. But the failure of society to take ME, then Long COVID, seriously has left me here in bed, in the company of hundreds of millions of others. 

And I am lucky.

So many people have had ME for longer than I have been alive. Many people are sicker than me (yes I am 'severe' and there is still a 'very severe' category).

I would be dead if it weren't for my parents and our privilege. I might not even know what was wrong with me. Think about how much privilege there is in the story I just told you. How many people have loved ones with tens if not hundreds of thousands of dollars to spend on trying treatments and paying specialists out of pocket, loved ones who can take them in and care for them, loved ones and friends who will even believe them? People who can luck into the specialists who may help instead of the many who might injure. I was able to stop working without considering money and I still pushed myself too hard and made myself worse. And so much more, too much to list here.

The only reason I relay this story to you is because of immense privilege and some luck.

Information about Long COVID and ME and how to donate/support the cause: fundlongcovid.com