Tiny Illnesses

When it all starts to slowly build up

I mostly write about my Big Illnesses with this newsletter, particularly my eye conditions that have affected my life for over a decade.

But one part of having chronic health issues is all the Tiny Illnesses that crop up, especially from being immunocompromised.

Now that my eyes are feeling more stable this month, I feel so grateful to have a break from constant eye appointments. These days, when I walk into the office, they don’t even ask me for my name to check me in anymore, because they all already knew who I am.

The good news has also brought surprising honesty from my doctors. Now that we can all exhale and agree that my eye look better, they confess to me how worried they’ve been all year. When they are training new fellows and have them observe during appointments, they explain, nodding over to me, “She’s one of my most complicated cases.” Maybe as a warning.

One of my surgeons tells me how he recently went to a conference of top glaucoma specialists, where he showed a video of him operating on my eye. The point was to get other opinions on what they would have done themselves in that situation.

“So, what would they have done?” I asked.

“They wouldn’t have taken the case at all,” he answers.

It’s frightening sometimes to hear how bad it is, especially afterwards. I always know surgeons try to stay calm and put on a good face for me, but it’s hard to know how dire it really is until once we’ve gotten to safety.

Only now, am I aware of how close I was to losing even more vision this year. Of how lucky I am that I am okay. It feels like an out of body experience, in some ways. To know that your sense of reality of the situation wasn’t completely accurate. It was, in fact, much worse.

And while I am deeply grateful to have my vision and to be stable, I still feel so much frustration when I have to struggle with my Tiny Illnesses as well. This started since I began getting treated for my MS in December 2023.

I don’t talk as much about my MS in this newsletter, but thought I could start. I’ve never experienced any physical symptoms from my MS, because they were able to catch it early enough. But doctors encouraged me to start treatment once they found lesions in my brain and spinal cord from an MRI two years ago.