To the Teenaged Girl With Spina Bifida: Hang In There-It Gets Better…..

Ugh! As if growing up and puberty weren’t hard enough-with the acne, growing two feet in a week and sweaty palms. Add to that leg braces, a wheelchair, and bowels and bladder that don’t work properly, and you’ve taken the awkwardness of puberty and kicked it into overdrive. Especially if your parents continually bought you only knee high socks to wear with your braces. Yep, I’ve been there, and I wanted to let you know, it gets better. Fortunately for you, ankle socks are more available now then they were when I was a kid, so you’ll be able to dodge that bullet. 😉

Then there is the question of boys. My mom tried to make me feel better by saying boys were maybe intimidated by my chair and braces and that’s why none ever asked me out. While this makes sense, it wasn’t all that helpful to me at the time. Seeing my friends pair off and start dating made me feel like an outsider. It sucked. I felt like I was an outsider and everyone else was a part of this great club that I could only dream of joining. But you know what you avoid when you aren’t dating in high school? Drama. It gets so much better after high school when the guys have grown up a bit and realize you aren’t all that scary. 

Then there is the issue of what to do about your lesion scar. I know you’ve been eyeing that cute bikini at Target. I also know the first thing that comes to your mind….your scar will show. Frankly this is true in any bathing suit, but especially a bikini. My advice? Don’t be afraid to ROCK IT, GIRL!! When you have a disability and are out in the world, the biggest tool you have at your disposal is confidence. It disarms the stares of those around you. Some may still stare, but it will be because they are in awe of your confidence. 😉 Besides, you can’t control the actions of others, you can only control what your response will be. Choose confidence and you will win every time. It gets better.

But your biggest obstacle being a teenaged girl with spina bifida? Likely your #1 best kept secret. A secret that if it’d leak out (pardon the pun), would humiliate you till what seems like forever: learning how to handle bowel and bladder accidents. This stuff isn’t supposed to happen past the age of 8. The number one tip I can give you? Know your triggers, such as diet, and avoid those things that turn your bowels and bladder into an overflowing faucet. For me it was avoiding caffeine.

Weather can also be a factor. I know, it sounds insane. But temperature extremes can trigger your bladder to gush forth much like Old Faithful–except your bladder is not as reliable. Let me explain; say it is the middle of summer, hotter than blitz and you go out with friends to the mall. You are using crutches to walk and you reach the inside of the first store. The AC is on full blast.  For some reason, if you don’t have an empty bladder, this drop in temperature can trigger a flow that’ll leave you with a puddle on the floor. The same thing happens in winter when you go from cold to hot suddenly. While you can’t completely prevent this from happening, there are ways to lessen your embarrassment. First, catheterize before you leave the house. And if you still are a little unsure, don’t rely on walking, take your wheelchair. That way, if you do have an accident, it’s more hidden. When you are in the car going on your outing, sit on the cushion of your chair. If taking your chair is not possible, you can still get by with using crutches. Just make sure to wear a disposable pair of underwear over your actual panties. I know it sounds super lame and uncool, but I promise you won’t look like a granny. And you’ll cease to worry about having an accident in front of that cute boy from art class. Nowadays these protective pants come in slim but absorbent forms that are comfortable and won’t leak through. These were a life saver for me in college. You can normally find these at your local pharmacy or places online such as www.hdis.com

Finally make sure when you go out you have plenty of catheters. I remember once when my grandparents and I took my parents to the airport. The trip took longer than we thought and they missed their flight. So we had to take them on to their next destination–a two-hour drive. Guess who forgot to take extras with her? Yep. I’ve lived and learned, and now I pass my tips onto you. 

But even with a vigilant diet and making sure to catheterize at regular intervals, accidents happen. That’s why they call them accidents. So what do you do? One way I’ve handled the unexpected accident is to try to pass it off as your period. This actually works better than you’d expect. Lessens the embarrassment for you, and it makes sense to the other person who expects this anyway based on your stage of life. When all else fails, use humor. Here, feel free to practice using these phrases:

1. “Hey, who put that water balloon on my chair??” (carrying around a deflated balloon with a hole in it adds authenticity)

2. “Yeah, when I sit too long, my butt gets really nervous and starts sweating profusely. My dermatologist says it’s a glandular issue”

3. “So I was running late and didn’t have time to dry off completely from the shower I took, so I just came here and stood under the hand dryer and I must have forgotten to dry off my backside.”

Puberty is tough. Going through puberty when you have a disability is even tougher. But I’ve been there and I promise, you can get through it. After all, it does eventually get better. I promise.

Cheers!

*image appears courtesy of Pinterest