The Unique Frustration of an Undiagnosed Teenager

My name is Meghan Bayer, and I might as well be the next feature on the TV show “Mystery Diagnosis.” Actually, I have a better idea. Paging Dr. House!

For the last four years, I have lived the life of a medically complex teenager. I live near Pittsburgh, a city known for its healthcare systems and technological innovation. This begs the question, “If this city is so medically and technologically advanced, why don’t I
have a diagnosis?” I wonder that myself every day.

In the last six months, the treatment plan that has been working so well for the last three and a half years suddenly stopped working. It wasn’t a pleasant treatment, and it took five to seven days, sometimes longer inpatient, but it worked. In December 2015, it failed and I was left with the question, well now what? I was started on higher doses muscle relaxers, which take the edge off the daily struggle and allow me to push myself in a manual wheelchair. It barely takes the edge off for me, yet the medications at the
dosages I require would sedate full grown men twice my size. Me? I’m a fully functional college student (minus the ability to walk) earning good grades and (attempting to do) martial arts from my wheelchair.

Without the ability to walk due to severely contracted muscles in my lower legs, I can’t drive myself anymore. This has resulted in a loss of independence I can hardly stand. Most of the fights I have with my parents are related to my health in some way (driving me to martial arts, disagreements over how I should be treated, and my overwhelming desire for hand controls so I can have my independence back, etc.). I’ve probably fought with my parents more in the last 166 days than I have in my whole life.

I’ve always been the good child in the family. Asking for help makes me feel like that has changed. My younger brother zooms off to school, lacrosse practice and hangs out with friends whenever he wants. My dad has the immense responsibility of working so we can afford to live and bears the burden of having a sick teenager. My mom works a casual position in the ER. Most of the time, she is cleaning, running errands or caring for our five dogs. Yes, you heard me right. Five.

While we desperately search for a diagnosis, I helplessly watch the opportunities, like study abroad, pass by. If that’s not depressing, I don’t know what is. OK, that’s a little dramatic, but my point is I shouldn’t have to be a prisoner in my own home and have to ask someone to take me to taekwondo, doctors appointments or to grab me some dinner somewhere when food in the house runs out and we need to do the grocery shopping. Grocery shopping used to be my job and probably one of my bigger contributions to the household.

No one could understand the challenge of trying to laundry while being swarmed by five dogs, let alone from a wheelchair. Household tasks are not as easily completed from the chair either. I’ve tried, but I have failed more often than I have succeeded.  If I have to be a 19-year-old fighting with my parents about something, can’t it be about curfew, parties or something more typical?

So now I find mom and myself driving 24 hours round trip to see this specialist at Mayo Clinic. We had to start our drive on May 8 (Mother’s Day and her birthday) to be there in time for the appointment on May 10. Flying was not an option for several reasons, mostly because I require so much equipment from a wheelchair to a shower chair. Not exactly things that can be stuffed in a suitcase.

All I want is to walk again. Every day, my prayer is “Dear God, please let me walk and be independent again,” and I know the prayers of my friends and family are similar.

It’s really lonely down here, and the medical system combined with insurance are frustrating me beyond belief.

So I am waiting for that rope to be thrown. I just hope that it comes soon, before my family and I buckle under the strain.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.