Blog Post 05: What is Good News?

My boyfriend loves Lord of the Rings. Love is actually probably not an adequate descriptor. He loves me. But LOTR? That’s something else entirely. I’ve never seen it and he was so excited to show me. With just an hour left, I got an email from my new doctor with the first line reading “some good news!” I asked him to pause it, eager to read what she had to say. The rest of the email explained that my liver and kidney function is good, my electrolytes are normal, and I’m still anemic. Tears. Immediately.

I sobbed for an hour. My doctor suggested that I double my iron dosage and come back for more labs in several months. I was devastated. I felt so heard at my first appointment, then so hurt at her phrasing. After listening to me describe how frustrated I am and how desperately I’m looking for answers, how could she think this was good news? How could she just brush me off for the next several months? The worst part of all: I ruined the movie.

Now this sweet man of mine assured me I did not. The email was at fault here, not me. My reaction was normal. (We did finish the movie once I stopped crying, have no fear.) Better yet, he spent the following day reading support groups for COVID long haulers. This image specifically had me laughing all day.

Yet these groups were sort of a game changer for me. I haven’t posted or commented yet. I’ve really been enjoying writing this blog, but I’m just not sure that a Facebook post in a group of strangers is my preferred medium. At least not yet. However, reading other people’s posts has given me the strength to go back to my doctor next week with new questions. Seeing my symptoms in other people felt so validating. How could this possibly be all in my head when there’s a whole community of people feeling exactly what I do?

I had initially planned to cancel my next appointment, but now I feel like I have the tools to advocate for myself. The leverage I need to push for other options. I wrote out an entire list of questions, each bullet pointed with comments about my symptoms and notes from posts of other long haulers- tests they had done, treatments they tried, etc. This way, even if (when) I cry during my appointment (confrontation is not where I shine), I have a piece of paper to read off of. I’ll still be able to communicate everything I want to say. My boyfriend is calling this the “intervention technique.” 

All of this to say, I’m in a weird spot. I am miserable and exhausted and sick all the time. However, I have an incredible family, an amazing boyfriend, and wonderful friends. People supporting me every single day. I have a new community of people who understand the way I feel, even if it is just over Facebook. I’ve found the energy to fully and formally commit to applying to medical school this cycle, eager to become the kind of doctor that I’ve been looking for throughout this process. I’ve come to terms with where I’m at. I was so desperate for there to be a short and fast answer to this. Some underlying medical mystery. I still wish that was the case, but I’ve accepted this for what it is: COVID long haul. Am I going to stop seeking answers? Absolutely not. There’s always a chance there is something else going on. However, us long haulers are a medical mystery in and of ourselves. While there may not be a cure or even a treatment, that doesn’t mean we can’t further address the symptoms and do more to mitigate them. Find a way to improve our quality of life until there is more we can do. That is still something worth fighting for.