Background/Diagnosis:

I was diagnosed with lupus at age 15. I was starting my sophomore year of high school and noticed a rash that the doctor said was eczema, but I knew it was not. I wasn’t feeling well, I had pain and my hair was falling out. My mom took me to the hospital and I was diagnosed with lupus. I was hospitalized for a month, I couldn’t take care of myself, I needed help to get dressed and eat, I was sore to the touch and I lost 20 pounds.

It was information overload. I was 15, I didn’t really understand what was going on, I was a dancer and on the track team with 2 college scholarship opportunities. Lupus took that all away from me.

Treatment:

After the hospital, I started treatment at a children’s health center, began getting better and went into remission.

The problem came when I turned 20 and had to transition to adult care. My new doctor started changing my medications, and I ended up hospitalized several times in one year. I was on methotrexate and folic acid and started having stomach issues. One day I was in so much pain that my doctor said to come to the office. After laying on her office floor she sent me to the emergency room without seeing me.

I never went back to that doctor. A friend of my mother suggested a hospital with a lupus center. I looked online and have been going there ever since.

I learned how to advocate for myself. I had to learn to be an adult. I used to keep things to myself and not share with doctor but learned to speak up.

I now have a good relationship with my doctor. I can call her at any time, it’s like she’s a second mom. It’s worth the 1-2 hours it can take to get downtown.

Maintenance:

I have done both physical and occupational therapy for my joints. I have changed how I eat, cutting out junk food. While I can’t run like I did before lupus, I do exercise.

I know the signs that a flare is coming on and I get to the doctor sooner.

I learned to explain what I need. Now if I end up in the ER I can advocate for myself.

Quality of Life:

I was diagnosed when I was young and very active. At first, I didn’t always take my meds. I was embarrassed. My peers didn’t understand. Whenever I tried to explain lupus, it was a pity party that I didn’t want.

For the 5 years in pediatric care I saw the doctor regularly and had lupus under control. Then in the initial transition to adult care, for about 4 years, I got worse. Now I have a doctor who I can be honest with.

I am in school now and will finish my program this year. I take classes and am able to do easy temp work so I can call in day to day and not go in if I’m not feeling well. I am on disability and work part time to pay for school and my car.

I have potential jobs after graduation that are willing to work with me to accommodate my health issues. The disability office at school has been very helpful.

I was always angry, feeling sad, I didn’t know how to feel, had so many emotions at once, I felt confused and lost.

That one fateful trip to the emergency room made me realize I had to take control. I learned to accept the situation, manage it, and make the best of it. I now know how to take care of myself and how to work with my healthcare team.

« Back to 2018 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/learning-to-self-advocate-in-the-transition-from-pediatric-to-adult-lupus-care/