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5 Lessons That Helped Me Start ‘Adulting’ With Illness

Transitions are rough for every young adult, but add in a chronic illness to the mix and it’s a whole different ball game. I was fresh out of college, top of my class, with many opportunities ahead of me: three job offers in different cities, the possibility of grad school, and so much more.

I had all of the normal young adult decisions to make. Which job offer do I take? Where should I move? How do I do this “adulting” thing? Here are five things I learned from my transitions into the adult world as someone with a chronic illness.

1. Know that it’s possible.

When I met other people with beta thalassemia major – people who had full-time jobs, families, and were happy – I realized I really did have a life ahead of me. Knowing that achieving your dream is possible is half of the battle.

2. Transitions are hard.

No matter what, transitions are hard. When I turned 21, I had to transition out of my pediatric hospital to an adult hospital. This is the hospital that I practically grew up in for 21 years. The nurses watched me grow up. They knew about all of the big things happening in my life, all the birthdays, my high school graduation, when I got my car, when I moved for college but came back at least once a month for treatment, and for everything in between. I know it’s weird to say, but leaving that hospital was one of the hardest things I’ve had to do. However, because of this experience I learned a lot about what I really needed from my doctor. I learned that I had to tell them what I needed and when I needed it.

3. Take risks – with precautions.

Just like most young adults, I wanted to graduate college and then move away from home and go on a new adventure. I applied for jobs as graduation grew near, but the hard part came after getting job offers. There were a lot of things that I, a young adult with a chronic illness, needed to consider when accepting a new job, that other people don’t really have to consider. I had to compare distances to a good doctor who can treat my illness. I had to compare insurance policies between my job offers. I had to find an apartment near my treatment center. I had to make sure that someone I trusted was nearby, in case something happened and I needed help. But no matter how confused I was after reading the insurance policies, or how overwhelmed I was from all the decisions, I knew one thing: I did not want my illness to limit what I do.

4. Asking for help is OK.

I realized that I could not do this by myself. I knew what I wanted, but I needed help getting there. I decided to ask for help from my college professors, from Cooley’s Anemia Foundation (CAF), and from friends. CAF pointed me in the direction of a good doctor who could treat my thalassemia and helped me sift through different insurance policies. My college professors helped me get job offers, and my friends and family helped me find a good place to live.

5. Be your own advocate.

After what I went through from previously transitioning to different hospitals, I knew that I had to be my own advocate. I know my body the best, and I know what I need from my doctor. To get the best care, I have to advocate for it. This time, I also had to advocate for myself at work. I teach elementary school, so I can’t really take off every time I am not feeling well. However, I do have to take off more often than most people, and I had to make sure my job could accommodate having to take off for treatment days. I did not qualify for the Family Medical Leave Act yet, but my boss was very understanding of my situation. I also had to make sure my boss and co-workers were aware of my illness and knew what to do in case something happened to me at work.

In the end, I had to realize that I could never have it all. Since beta thalassemia major is such a rare illness, with at least 1,000 Americans diagnosed, there are few resources for us. Thanks to some amazing people at the CAF, I found a great doctor who had experience with treating thalassemia. Unfortunately, the closest job offer I received was still an hour away from the doctor and treatment center. Still, I was used to driving long distances for treatment, and was willing to make the drive once a month if it meant getting the best health care possible. It helped to also have a good PCP nearby. I accepted my dream job offer, teaching second grade in a low-income area, and found a great apartment. I have amazing co-workers, and my best friend lives nearby.

I am so glad that I did not let me thalassemia limit me or define what I could or could not do.

I am healthy (in my sense of the word). I am thankful to have dream job with my favorite people surrounding me.

I am happy, and I could not ask for more.

Most of all, I am so glad that I didn’t listen to those who kept telling it wasn’t possible.

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