Transitioning to Adulthood with a Disability: Entering Adult Healthcare

After eighteen years, pediatrics had become a kind of comfort zone. Doctors knew everything about me, appointments were routinely scheduled, and my parents were always by my side. When I entered the adult healthcare system, everything stopped. It was like stepping into a whole new world.

One of the very first things I had to get used to was anonymity. In pediatrics, each one of my doctors had one or more folders filled with my medical history and information. Now, it was up to me, or in most cases my parents, to educate my new physicians on eighteen years of disability, illness, and surgeries. It took a lot of patience, repetition, and note-taking before everyone was caught up.

Something that took a long time to achieve was getting back to a routine. In pediatrics, I had a full team of doctors, and a social worker to help my parents coordinate dates and times for appointments. With those resources gone, it was up to us to keep a schedule. There were a few times early on when I would end up with two or three appointments over consecutive days. It has only been in the last two or three years that we’ve gotten back into a routine of coordinating appointments. Coordinating appointments helps save time, effort, parking costs, and certainly lessens your stress. Don’t be afraid to ask to have your appointments coordinated; I have found most clinics very accommodating to my needs.

Something I was not prepared for was my first surgery in an adult facility. The procedure itself was something I had been through many times before, but what changed was the lack of parental involvement. With pediatric surgery, my parents were always allowed to stay with me right until I was wheeled into the OR. As an adult, I was left in a bed on my own, waiting for the surgeon. It was a real shock, and I’ll admit I was sad, but I have since had other surgeries and have grown more confident after every one.

I am now as comfortable with adult healthcare as I was with pediatrics, but it took almost a decade to get to this point. I couldn’t have done it without help from my family and a few doctors who helped make my transition easier.

Future post: Preparing for post-secondary education

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DISCLAIMER: The legal details associated with some of the following topics apply to my personal experiences, and may differ from place to place. Consult with local professionals for specifics.