Child painting on a wall

Bella’s Story

Bella is 20 yo, an artist and hopes to major in Anthropology. She has had to defer college until her health stabilizes. She is unable to attend at this time due to severe fatigue and dysautonomia that gives her air hunger and neuropathy. She was diagnosed with chronic Lyme when she was 14 yo and was in Lyme treatment and improving when she got a Covid infection in 2022. Her baseline fatigue and dysautonomia worsened from Covid and is now dealing with both chronic Lyme and Long Covid.

About a year after her infection. Chronic Lyme symptoms are the same symptoms as LC, so determining where Lyme symptoms end and Long Covid begin was difficult. After some time passed her Lyme doctor said she also had Long Covid.

A neurological/nervous system disorder like LC during the teen affects more than their health, it interrupts the process of forming their identity. Some kids can’t remember what it was like to not be sick and disabled. Imagine graduating high school and your last “normal” years were middle school. How does a kid who spent high school mostly bed-bound approach re-entering the world as an adult? I wish people understood that this is complicated in ways you can’t imagine until you live it. While recovery and improvement are the ultimate goal, there is trauma and the business of growing up that still has to be addressed. The notion that “Long Covid does not affect kids” is a harsh pill to swallow when your child’s future is unknown, the thing they’ve been working for their whole lives (like college, career) is on pause, and they can barely remember who they were before COVID.

Support regarding education would look like hybrid online and in person options for kids with LC. If she could have had the option of attending school on the days she felt up to it, then switch to online on the bad days, it would have meant staying connected to peers, staying connected to her local community. Medical support would look like information about Long Covid symptom presentation and symptom management getting to doctors rapidly, a sense of urgency in updating guidelines for providing care for kids with LC. It would look like collaboration with our child’s doctor to try supportive measures to calm inflammation and stabilize symptoms.

LCF has been a source of reliable information that has been difficult to find elsewhere. It is incredibly lonely for Bella to have LC during an ongoing pandemic, the risk of reinfections looms and increases the isolation. Having a community to turn to in LCF has been a lifeline.