Two important takeaways in boosting your child’s self image in the face of chronic medical issues: watch TV and lie.
OK, hear me out.
I lost my dignity a long time ago. I think it was somewhere between being naked in a room of people while I suffered 16-33 hours of pain through two childbirths, walking around for the next 5 years with “questionable” white stains all over my clothes (Spit up! It was spit up…), and then running the gamut of public parenting (I see the judgmental stares…I know they are cute, but they still deserved to get yelled at…). So, when being a “responsible” connective tissue patient meant making even more changes to my life, I was ready. Such as, wearing a fanny pack so I don’t put any pressure on my traps by carrying a purse. Done. I rock it (see skull fanny). Or, wearing flat shoes so I can wear orthotics. Two words: ankle boots. I pull around a wheeley-bag (leopard print), sport circular hickeys from cupping sessions (thanks, Gwenyth, just…stop talking, OK?)
My TENS unit is disguised by most cardigans, and when I wear my black wrist brace, I wear a long black sleeved shirt so it looks like an “arm warmer.” Making EDS fashionable has become my personal mission.
I have to admit, that I have been stumped by the phenomenon that is Kinesio tape. If you’re unfamiliar with this product, it is simply a miracle. I don’t know how it works, but here is an awesome article about it. What I do know from my own experience, is that for the myofascial pain of tendonitis, trigger points and other such pains that come with the EDS territory, taping can bring near complete relief in minutes. My children love it, and rather than feeling helpless when they hurt, I can give them a giant muscle band-aid. Once you learn how to put it on, it’s easy to DIY, and it stays on for days, which is great for your paycheck…not always for your wardrobe. I have walked out of the house more than once in a Maxi dress for a night out only to realize that I had bright blue tape on my neck and shoulders. (P.S. I have since discovered that if you put Biofreeze on your skin before you apply the nude tape, it lasts forever! I took a piece off after 15 days just to make sure my skin wasn’t falling off…it wasn’t. I use the gel. I am curious if the spray works too, so if you try it, let us know!)
My daughter did not like wearing her tape in public that first time. It was summer, and we were at the pool. Lots of people asked her about it, and she decided that price was too high. One night after that, we were out ordering dinner, and the cashier noticed the tape on my arms. “Cool,” he said. “What sport do you play?” At first I wasn’t sure what he was talking about. “That stuff – I’ve seen it on TV during the Olympics, right? What’s your sport?” Without missing a beat I said, “Beach volleyball.” My kids smirked behind me. “Oh yeah? That’s awesome. I could tell – you look like an athlete. Well, here’s your food.” I look like an athlete? Nice!
I’m not sure what lesson I taught them, but after that, she wasn’t as embarrassed to be seen in her tape. Maybe the lesson was that not everyone is looking to hear our sob story, and that she is not obligated to tell it – that it’s OK to go with the white lie from time to time, especially when it helps us focus on the best part of ourselves. My kids are athletic. They will be able to truthfully talk about their own sports: ballet, soccer, horseback riding, hip hop, and wherever else their heart takes them. Even if they were taped from just waking up in pain, they can choose to focus on their inner Olympian.
I too had been athletic when I was growing up: dancing, swimming, yoga, but not knowing that I have EDS for so long has caused me a lot of injury. They won’t be like me, I’m doing everything I can to make sure of it. I think life has been better for my children’s generation that it was for mine: back then we picked on the fat kid, the asthmatics, the four-eyes, and God help any child who had to use adaptive equipment: social suicide. Now much of the anti-bullying rhetoric is working. My children have sported glasses, retainers and braces on their teeth, back support pads, orthotics, keyboards for writing, Kinesio tape, ice packs, ankle, knee, and wrist braces, and not one kid has ever teased them for being “weird.” They will grow up in a world where people are learning how to take better care of their body, even if it means you look a little silly sometimes.
(first published on Blogger on 4/8/14 2:25 PM Pacific Daylight Time)