Sydney Studer: Diary of a COVID long-hauler, Chapter 4 (Column)

Note: The Lawrence Times is running this series written by a community member who caught COVID-19 around the beginning of the pandemic in spring of 2020. Sydney Studer is reflecting, documenting and sharing her experience with what has come to be known as “long COVID.”

This is the final chapter.

Get caught up:

• March 31, 2021: Chapter 1: The ‘Tiger King’ era
• March 31, 2021: Chapter 2: Tinkerbell the greyhound
• April 16, 2021: Chapter 3: Running for — and from — a cure

4: For Nora

My quest then was for healing. My quest now is for forgiveness.

Last summer, in the midst of my pain, I learned about other long-haulers. I read about a virtual support group that had been started for people whose COVID was lingering. I joined and was immediately blown away. There were so many others like me. 

Finally. I wasn’t alone.

The Body Politic Slack group is where I found the #longCOVID hashtag. I searched it on Instagram and was once again blown away. I read dozens of stories about people who were still suffering. I saw myself in every one of them.

One person in particular will forever be my friend, united by the suffering and pain of long COVID. Her name is Nora, and her long COVID tenure started around the same time as mine. We followed each other on Instagram and quickly became friends. The sharing of our symptoms and random Instagram-DM check-ups turned into the exchange of our phone numbers and daily check-up texts.

Nora is an artist, a dog-mom, a daughter and a sister. She is creative and hardworking. She had no prior physical medical problems before getting COVID. None.

To this day, Nora is not better. Her life continues to be dictated by long COVID, day in and day out. She has developed trigeminal neuropathy. Because of exhaustion and fatigue, she has driven a car just once in the past year. She still has fevers, low oxygen levels when standing or moving for too long, night sweats and dozens more symptoms.

I asked Nora what she wants people to know about long COVID. My heart broke as I read her text: “I just don’t want to be forgotten. I want people to know that.”

Although there are now thousands of posts with the hashtag #longCOVID, I worry that the long-COVID community is slipping away from peoples’ minds.

If you never knew the pain of long COVID, it might be hard to remember your neighbors who are now shells of who they used to be. If you do know the pain of long COVID, but have since recovered, you remember, but have probably begun to move on.

If you’re like me, you are in a tight balance between the two. It’s a survivor’s guilt of sorts: being almost-recovered — sometimes slipping into a relapse and other times going weeks without a symptom.

If you’re like me, you don’t want to keep revisiting the dark place that holds the worst nights of your life, but you feel guilty for the good days.

I survived. I am actively recovering. I recover over and over again as the relapses of the symptoms of long COVID get smaller and less frequent.

I have found healing in this disease, and I am on my way to finding forgiveness, too. Forgiveness because this wasn’t my fault. Forgiveness because it wasn’t anyone else’s fault. Forgiveness because there is no rhyme or reason why Nora is more sick than she was on day one, and I am far less sick than on day one. 

The long COVID community is resilient. We will not be forgotten.

— Sydney Studer (she/her) lives in the Kansas City metro with her two rescue greyhounds and fiancé. She is a runner who loves game nights with her friends and sitting by the fire pit on a cool night. Long COVID derailed her running, but she is getting back to it, one day at a time.