I have lived with cerebral palsy for 24 years. As a child, cerebral palsy did not impact me very much. I did well in school, participated in extracurricular activities and enjoyed spending time with my family and friends.
Puberty was when I first experienced functional shifts. This was frightening. I slowly lost the abilities that I once had. I blamed myself. Looking back, this was when I started to develop depression. It made me sad that I couldn’t do as much as I used to.
In my adulthood, cerebral palsy has affected my mental health. While my diagnosis hasn’t changed, its impact on my quality of life has. I experience chronic pain frequently. I cannot walk long distances anymore and experience more involuntary movements, especially in my legs.
I could no longer crawl on my hands and knees, and using forearm crutches became harder. When I was 13, I decided that I needed to get a power wheelchair. I was upset that I needed a wheelchair. At first, I was embarrassed to use it. Today I can’t imagine not having a power wheelchair. I’m much more independent with my wheelchair.
Unfortunately, the physical symptoms are just one part of my life. The physical symptoms can also be managed with medication, surgery, and physical therapy. It is much more difficult to manage the mental health symptoms I experience.
As a teenager, I began to develop depression and anxiety. I began to feel sad on a regular basis but I still saw my future as bright.
In 2019, my mental health began to decline dramatically. At the end of my freshman year of college, I went to the campus career center with hopes of finding a summer job or internship. The staff acted surprised to see me there.
I found an opportunity at a local publishing business. I was disappointed to learn that the businesses was not accessible. Later that year, I started to look for a job again. I have filled out hundreds of job applications since then. Every rejection has been hard to see. Four years later, I am still unemployed.
At 24, I am still looking for work. Most people my age have already worked for several years. Unfortunately, I have only had one paid work experience, writing for a magazine. It frustrates me that employers don’t want to hire me. In fact, some employers have rescinded interviews after I have told them that I have cerebral palsy.
I am due to receive a new walker soon. My PT has already written the letter of medical necessity and submitted it to my insurance company. I then have to wait for the health insurance company to approve the request.
While I am grateful that my PT is willing to help me get what I need, it is frustrating to know that my insurance likely won’t cover it immediately. Unfortunately the appeal process is also lengthy. However, because my equipment costs thousands of dollars, it is untenable for me to pay for it out of pocket.
It is baffling to me that I have to go through a lengthy process to continue being able to walk. Sometimes, I wish the health insurance company could spend a day in my shoes. Unfortunately, health insurance companies don’t care about people’s quality of life. Health insurance companies want people to settle for the cheapest possible equipment regardless of their needs.
Cerebral palsy should not stop me from living my life to the fullest and participate in society. However, I do wish that it wasn’t so difficult for people to get the equipment and services that they need.