TW: childhood medical gaslighting; child abuse (the latter is later on, and I do warn before it begins)
This is my first blog, and I want to start this website off with saying: never assume a kid is lying or exaggerating their symptoms. Even if your kid primarily complains about their symptoms when you ask them to do chores or go to school, consider that it’s because what you’re asking them to do makes it worse. Furthermore, just because they then go play with friends and “seem fine” doesn’t mean they are. Rather than assuming that they’re faking, assess:
are they exceptionally tired/sore/lethargic after playing;
have they changed their socialising habits to be less physically active (ie, used to play soccer, now plays video games);
do they sit out of physical activities with their friends;
have they started turning down more invitations to more active/tiggering activities;
are they playing fewer sports;
do they recently feel socially isolated, like their friends don’t want them around due to their chronic illness (ie, “Sarah won’t eat lunch with me anymore because I complain too much about nausea”);
have they recently become depressed or anxious for “no reason” (extremely common with chronic illness);
do they recently feel like they can’t tell you things or can’t trust you.
Chronically ill adults feel miserable after doing fun stuff because it's exhausting. However, we would still rather do that exhausting and fun thing than an exhausting and sucky thing. Think about it: would you rather go for a five mile hike on the weekend or have to walk five miles to work one morning? Anyone with limited energy prefers to put that energy towards the fun things, kids even more so. Never assume they’re lying.
If you want some dark context to understand why this is so important for me, continue reading. However, the remainder is heavy on child abuse.
As a kid, I had severe headaches and debilitating joint pain. I now have the words for what caused this: hEDS, patellar instability, scoliosis, kyphosis, lordosis, sacralization, and sacral dysplasia. However, because I was a child, everyone thought I was exaggerating or faking. Friends included. The thing is, I have never once lied about my symptoms except to downplay them.
In fifth grade I had a severe headache/migraine almost every day, but I was never taken to a doctor. After a while, I was called a liar. And after being called a liar enough times, I stopped complaining. Then one day a few years later one of my parents made a comment about how I used to have headaches. I told them they never stopped. I was finally taken to my PCP and had an MRI, but was never taken to a specialist. My family had the means to easily do so.
In sixth grade my knees and/or knee caps starting dislocating on a regular basis. “Stop complaining.” “Growing pains.” “Hormones.” “Normal.” I broke a bone because my parents wouldn’t allow me to see doctors on an acute basis and have my joints relocated.
In seventh grade I subluxed a vertebra in my upper back. I put my back out. Ya know, the thing that usually happens to middle aged men and they take a few days off work, or even go to the hospital and are given opiates. I complained about the severe pain for months and was, again, prohibited from treatment because they thought I was exaggerating. That lack of treatment caused scoliosis and kyphosis.
In ninth grade, my atlas went out in my sleep. This time I didn’t say anything. Instead, I passed out in class several times and had tears in my eyes—no exaggeration—all day. I didn’t ask for any pain meds, even advil, because I knew they would ask why. And I knew they would say I “slept wrong.” After I got home from school, I relocated the vertebra myself. I had no idea that’s what it was at the time, but now I see it as the first time I actively relocated something.
Growing up, I also had RSV, pneumonia, and the influenza. I have this weirdly distinct memory from when I had pneumonia at nine. My dad, a paramedic, was working 24 hour shifts (then 48 hours off) at the time. He was at work that night, so my mom had me sleep in their bed so she could more easily take care of me. I remember I had a 105F fever and was walking to my parent’s en suite bathroom at about 8pm. I was barely walking and not very conscious; the out-of-it where you can’t feel your legs but you’re still walking. I sat down on the toilet and suddenly felt overwhelmingly sleepy. I leaned on the counter to my left so I wouldn’t fall over. All of a sudden, it’s 3 am and my mom is standing over me, holding a wet wash cloth to my face trying to get my fever down. She started crying when I woke up, but I just kept saying, “How did I get in bed? How did I get here? What happened? Why is it this time?” She was so relieved that I had woken up that she didn’t realise I had been unresponsive for six hours due to a near-fatal high fever. I wasn’t allowed to go to the doctor even for that, and have still lung damage because of it.
Every adult around me was so adamant that I was “fine.” But I broke four bones and have permanent injuries because of their gaslighting. Scoliosis, kyphosis, lordosis, sacral dysplasia, patellar instability, and asthma were all avoidable. I wasn’t born with any of these. I developed them because people assume children lie about their symptoms. They assume that children don’t know “real pain,” that they don’t experience “real health issues.” Yet, I had more conditions by 18 than both of my parents have had, combined and their whole lives put together.
Don’t assume, assess.
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