Pediatric Long COVID
It's Pediatric Long COVID Awareness Week, and kids are suffering due to our society's inaction & ableism.
I started writing this a few months back, and decided it would be good to publish it on Pediatric Long COVID Week. The organization Long COVID Families have a Community Call to Action for today that you can find on their website here: https://longcovidfamilies.org/advocacy/pediatric-long-covid-awareness-week-2024/
People believe that children are not impacted in any way by COVID infections. This was part of the justification for opening up schools. It's also why people do not list them as a “high risk” age group. Parents are being lied to about the risk COVID poses to their child. People talk about them as if they have flawless immune systems, as if parents never need to worry about their health when it comes to getting infected with COVID at schools. The truth is, even if many of them do have seemingly mild infections, they are at risk for Long COVID and other long term health issues as a result of COVID infections, such as developing autoimmune diseases, just like the rest of us. What seems like just a “mild infection” could change their lives significantly. Just as the media largely ignores adult Long COVID patients, it is ignoring the fact that children and adolescents are getting Long COVID.
I was curious about the research on Long COVID in children. I happened to stumble across a 2023 study called “Social Stigma in Children with Long COVID.” Because I also had a poorly understood invisible chronic illness as a child and felt impacted by the stigma, I was curious. The results were very interesting to me as I felt I could strongly relate to them: “Children with Long COVID significantly more frequently felt embarrassed about having Long COVID, felt embarrassed about having physical limitations, felt they were valued less due to Long COVID, felt they were different from other peers due to Long COVID, felt significantly more frequently that people behaved differently towards them because they might be lying since the diagnosis of Long COVID, that they were less respected by others due to Long COVID, that other people thought that Long COVID is not a real disease, that other people thought that developing Long COVID is a sign of weakness, and that other people might judge them negatively due to their diagnosis of Long COVID.”
The results broke my heart and strongly resonated with me at the same time. I may not know what it's like to have Long COVID, and I'm sure there are many aspects you can never understand unless you have it. But I have been diagnosed with a misunderstood invisible illness as a kid, in my case Fibromyalgia. I remember feeling embarrassed when I missed school, had to sit out during activities because I needed rest, left class or school early to go to the nurse's office or go home, or when I explained my symptoms to one of my peers. The embarrassment came from a fear that they would judge me. Having a chronic illness as a child or teenager makes you feel especially vulnerable to judgment. I definitely felt different, less valued, weak, and less respected. Some of these fears developed because I knew we lived in an ableist society even before I could articulate it - and I saw how we were supposed to view “weakness” and “laziness” and rest, something I needed a lot of. Others developed because I had peers and adults treat me as if I was faking my illness, or at the very least, I watched them poorly mask their skepticism of me.
I also read an ABC News article called “12-year-old describes 4-year battle with long COVID.” It describes the experience Theo has had since he first contacted COVID at 9 years old. He has gotten COVID 3 times and each case was “mild,” yet he has had to live with many debilitating symptoms of Long COVID, which took two years to get diagnosed. Part of Theo’s Long COVID diagnosis also includes a condition that I have, POTS. I was diagnosed in 2021, though I have had symptoms of it since I was a teenager. My symptoms before getting on medication included fainting or coming close to fainting, dizziness, and difficulty standing in place for more than a few minutes (even standing in line caused symptoms). Now that I am on medications, I still have symptoms sometimes, but they are more managed than when I was first diagnosed. I have to constantly be thinking about getting enough salt and electrolytes throughout the day. I still have flares of POTS symptoms, and I have to be mindful of my triggers, limitations, and lifestyle changes that help me (such as wearing compression stockings).
My POTS symptoms started in my later years of high school, so it breaks my heart thinking of someone as young as Theo experiencing them. I related to so much of his experience because I was diagnosed with Fibromyalgia around his age. Like him, I also received a misdiagnosis of Lyme Disease, and misdiagnosis means a longer period of time without the right treatment. When I was first learning how to manage Fibromyalgia, I also went half days, like he does with Long COVID. I remember worrying about judgment from my peers when I left school early. There is such a need for education about accommodations and invisible illnesses in schools. While I am grateful that schools offer accommodations, chronically ill students shouldn't have to worry about their peers thinking they are receiving “special treatment” or believing they're faking because they don't “look sick.”
One of the most heartbreaking things to me about children having Long COVID is that regardless of whether or not they are eventually symptom-free, this will always be how they remember a part of their childhood. I still recall my experiences as a chronically ill child fairly vividly. I still have dreams about having to get through the school day, and going to the nurse's office. Even though I have positive memories of childhood and adolescence even after my diagnosis, they don't erase the impact that being a chronically ill child in an ableist society had on me. Many people hear about chronic illnesses and assume they will be fully treated eventually and everything will be fine. I imagine many people think the same about all Long COVID patients, including kids. Your experiences during childhood and adolescence often leave a lasting impact on you. How could the same not be especially true for children with Long COVID? And yet so many are ignoring the number of children ending up with Long COVID.
Another thing that I can't help but think about is that as shocking as the number of kids with Long COVID may be at first, it is almost definitely an undercount. There is of course the issue of many doctors not knowing about it or believing it doesn't exist. This is a problem many people with chronic illnesses experience, where doctors serve as a roadblock to diagnosis because they don't educate themselves about chronic illnesses and don't listen to their patients. But the other roadblock that chronically ill children, especially ones with Long COVID, may face is having parents who don't listen to them or believe the symptoms they describe. The children in articles about Long COVID are lucky, like I was - we all had parents who listened to us enough to help us get diagnosed. Other parents of kids with Long COVID unfortunately may tell their kids to toughen up, stop complaining, it's all in your head. Another issue is how politicized COVID is - some parents of kids with Long COVID may believe COVID isn't real, or Long COVID isn't real. They may even accuse their kids of faking for attention. Children depend on support from their parents when it comes to any chronic illness, and a parent who doesn't believe their kid about their symptoms most likely won't take them to a doctor's appointment for them. For this reason, there are almost certainly children with Long COVID who lack both a diagnosis and support from their families - and as a result, they are suffering in complete silence.
When people talk about how children have suffered during this (ongoing) pandemic, they are often referring to things like their mental health or “learning loss” as the result of “lockdowns” or online learning. All children have struggled, but often children are used as an excuse to argue that every precaution we took against the virus in the beginning was “unnecessary” and even “harmful.” But certain children have always been deliberately left out of these conversations. Children with Long COVID are suffering due to the failures of our public health and healthcare systems, rampant COVID misinformation spread by the media and on social media, the reckless decisions of politicians to re-open schools with zero precautions in place as well as their inadequate action on Long COVID, the failures of schools to implement precautions and protect or at least properly accommodate their vulnerable students and students with Long COVID, and the ableism in our society. We owe it to these children to learn what we can about their experiences and fight for them.
Works Cited
Buonsenso, D., Camporesi, A., Morello, R., De Rose, C., Fracasso, M., Chieffo, D. P. R., & Valentini, P. (2023). Social Stigma in Children with Long COVID. Children (Basel, Switzerland), 10(9), 1518. https://doi.org/10.3390/children10091518
Kindelan, K. (2024, April 10). 12-year-old describes 4-year battle with Long Covid. ABC News. https://www.abcnews.go.com/amp/GMA/Wellness/boy-describes-years-long-battle-long-covid/story%3fid=108764741
Two important organizations you should follow/support:
Long COVID Families (US-based)
https://longcovidfamilies.org/
Long COVID Kids (UK-based)
https://www.longcovidkids.org