It’s becoming a way-too-often instance that people give me a confused head tilt when I tell them I have long COVID. Everyone’s got advice, nobody (even other long COVID patients), understands what I’m experiencing. I often get a sense that people think I’m exaggerating. I’m not.
I live with – and am learning to manage – chronic dizziness, brain fog, and exhaustion. I’ve seen specialists who have run me through every test available. The resounding opinion is that COVID has affected the function of my vestibular and ocular systems. Basically, I can’t move my eyes without moving my head or my entire body without feeling like I’m on a tilt-o-whirl. It also happens if I stand up or sit down too quickly, if I turn over in bed, or if I’m in a place that’s too visually stimulating. It’s exhausting.
Long COVID is becoming more prevalent. The last stats I saw cited that 30% of us who had COVID still have symptoms of varying types and of varying degrees. It’s real. Speaking for myself and the few other long COVID patients I’m getting to know via a research study we’re participating in, here are a few ways to help us:
- If you are in our friend and family circle, try not to start conversations with “How are you feeling?” Let our world be more than our illness. Invite us to do things. Trust us to say “yes” or “no,” depending on how we feel. And gracefully accept our answer.
- If you are curious about what we’re going through, ask questions, listen to our answers, and stop talking. Things like “But, have you been checked for an ear infection?” or “Well, when my cousin had vertigo…” are complete crap. If my symptoms were tied to familiar diagnoses, they’d have been treated by now. Do not minimize what I and others are going through.
- Understand that comparing us to each other is worthless. Long COVID symptoms are broad-reaching. While there are some similarities, I have yet to meet someone whose symptoms exactly match mine.
- If you have had COVID and have lingering symptoms, seek help. Don’t wait. This website lists many COVID rehab facilities. This page shows Minnesota clinics. If you’re not in Minnesota, dig around the site and see what’s available to you. https://www.survivorcorps.com/pccc-mn
- Please understand that all of this is new. Research is going on every day. Doctors don’t have all the answers because, in most cases, answers don’t yet exist.
Be open-minded. Be kind. Lose the pity. Those are the three things I/we need the most.