Create Your Own Condition Support
By: Quita Christison
Quita Christison shares her top 5 tips to create your own condition support.
I would often feel that I had to explain why I broke my leg again or why I had missed school, so I decided to create my own condition support. I have a rare genetic condition called Pycnodysostosis (PCYD), sometimes referred to as Toulouse-Lautrec Syndrome.
When I was younger I was in and out of the hospital because of fractures and surgeries. I was on crutches almost every summer, sometimes I would use a walker or a wheelchair. I was angry because I wasn’t matching my peers. I wanted to run, jump, and not worry that one misstep would be traumatic.
In high school, I had 3 rods placed in my legs. One in my left femur after a displaced fracture from a game of leapfrog, and one in each tibia in the hopes of preventing more fractures.
When I was 18, I had major surgery to address my jaw malformation and had braces for 7 1/2 years. I like to joke that I went through a lot to get this smile. When I was in college, I got my right femur rod placed. My doctors and I decided on this plan and timing since I was done growing, standing all of 4'5".
Seeking condition support means advocating for accommodations while in college and grad school, and continuing to do so at work. It also means working on my condition being a proud part of my identity. I've been far more outspoken about my diagnosis in the last few years than I was in the decade before.
The two main things I deal with on a daily basis are my height and pain management. Below are examples of how I own my condition support:
- Necessity is the mother of invention: I have 4 different size step-stools around the apartment and I use at least 2 of them all day, every day. To get a snack, to grab a dish, to get the laundry done, etc. Thank goodness, my fiancé does most of the laundry now. Top-loading washers are the bane of my existence.
- Always be kinder than necessary: This is my mantra when I deal with adults and their misguided questions or comments. I don't mind the genuine curiosity of children and I'm happy to engage with them. It's adults that I take issue with.
- Ibuprofen is my one true love: I deal with pain management on a daily basis. Ibuprofen really helps relieve my pain due to arthritis, stress fractures, slipped discs and chronic migraines. I have stronger stuff, but I only take it when I really can't cope.
- Get yourself an electric heating pad: You will thank me later :)
- Stay active: Probably the most annoying but also the most necessary is that I have to keep my body strong by staying active. It can sound counterintuitive to my condition but when I'm in pain a good yoga session or a gentle walk outside can really help. I've gotten into some terrible cycles of inactivity leading to more pain, leading to less motivation to be active, leading to even more pain...
I've had surgeries that have given me more confidence in trusting my body. I know my body and know its limits in the best way possible and that has helped me accept my diagnosis. I'm tuned into my body. I listen to it and try to give it what it needs. If I didn't have my diagnosis, I'm not sure I would know myself as deeply as I do because of it.
Because of my condition I have had to become really good at communication. I have learned to put my ego aside and ask for help. My fiancé and I want to start a family soon but with my condition, I've come to terms that it would be too hard on my body to carry a pregnancy. We are more than excited to start the adoption process. We know that it will be a team effort to raise a family. By the time our kids are ~18-months old I shouldn't be lifting them, among other things. We will all learn to adapt. Our home will be full of love.
Quita Christison is the outreach coordinator for NextStep, an organization that helps young people living with chronic illness and other diagnosis transition into adulthood by offering safe spaces to learn anything from health education to finances.