Today I learned that someone very young and close to me has Celiac Disease. It made me sad. This young’un will have to live within some very strict guidelines for the rest of their life or risk serious damage to their body, anything from malnutrition to an increased risk of certain kinds of cancer. No kid should be so constrained at the outset of their life. They should be able to grow and explore the world around them—including food! – however they like.
The good news is that the condition was caught by observant parents and good providers early enough that there does not appear to be any intestinal damage. Also good is the increasing level of accommodation that can be achieved with gluten free products and careful food preparation. But best is the support that he will get, likely without even knowing most of it, from their supportive family.
We’ve talked about stigma here before, mostly as it applies to mental illness, but it applies to all chronic diseases. It’s all about anything that can set you apart. And what sets a child apart from their peers more than not being able to participate in everything their siblings and peers do? Or special measures taken that single that child out, however necessary and/or well-meaning.
It follows you into adulthood, of course. That’s the thing about chronic life. There’s no getting rid of it unless science finds a cure. I was speaking to a friend recently. She is in a job where her employer violates reasonable accommodation laws every day. Neither of us has a condition that requires accommodation beyond a flexible schedule. I get that from my employer. She doesn’t. Either way, we both feel guilty for asking for telework privileges, as if it were something no one else asks for (everybody asks for telework). As we chatted, we realized that asking for accommodation somehow makes us feel lesser, as if we are inferior employees because we need to ask for special treatment (that everyone asks for, whether they have a condition or not). I think it comes from everyone around me treating my conditions like a BIG DEAL all my life (they are).
When I spoke to the young’un’s parents about the diagnosis, they talked about how they were not planning on calling it Celiac Disease because ‘disease’ is such a loaded word. They said their young’un already knows about classmates’ peanut allergies, so they are calling it a gluten allergy. What a wonderful way to encourage understanding even while making the young’un part of another group, even if the group in itself is set slightly apart. But 1) the young’un is not alone and isolated in their new circumstance, and 2) though allergies can be very serious, they don’t have to be, so the young’un doesn’t have to bear the weight of the condition until they’re ready. I felt oddly lighter by the time I hung up the phone.
I was slightly younger than the young’un when I was dealt my first medical blow. There was no way to disguise how serious it was. The second blow didn’t need to be as heavy as it was, but coming in the time and place that it did (the Midwest of the early 1990s), Type 1 diabetes was not understood well enough for it to be treated in an age-appropriate way. It was one size fits all back then.
Maybe now, with this one kid, we adults can use a graduated approach and spare the kid a burden no kid should have to bear. Maybe the young’un gets to keep being a kid. Maybe this one will grow up and not feel lesser for needing what they need.
And if we can do it for one, why not for all?