At age 12, I started to feel very tired and achy. I started losing weight and had trouble keeping up in school. Summer came, and I felt a little bit better, but no one could figure out why I was always so tired and achy. I started middle school that fall, and things got worse. I had trouble waking up for school, even after 12 hours of sleep and could barely make it through the day. I stopped participating in all of my extra-curricular activities. I lost many friends during this time because I didn’t feel like socializing most of the time and when I did attempt to do things, I was no fun at all. I felt like my life was slowly slipping away. My mom took me to the doctor and was convinced I had depression. That doctor’s visit started a spiral of events that would take a year to unfold.
A few days after that doctor’s appointment, my test results showed that I had Hashimoto’s Disease (hypothyroidism) and Rheumatoid Arthritis (RA). So now we had an answer as to why I was so tired and achy all of the time. I was immediately admitted to the hospital and stayed there for two weeks for further testing and treatment.
After I was released, I was on steroids for several months. Although I felt less achy and more awake, the steroids wreaked havoc on my body. My face and body began to completely change in appearance, which I later learned was called Cushingoid Appearance. With all of these changes, I had trouble controlling my mood and would swing between being irritated and depressed. Middle School was also not the best time to be struggling with autoimmune disease. My classmates did not understand what was going on and even asked if I had had plastic surgery on my face. I mean really, who would intentionally make their face this way!
Eventually my symptoms stabilized and I was slowly weaned off of the steroids. My doctor also changed my RA treatment to Humira. I never thought I would be so happy to switch to getting a shot! I thought things were starting to turn around for me, but my journey was not yet complete.
A few weeks after being weaned off the steroids, the tiredness and achiness started to return. But this time, I also had extreme nausea and pain in my abdomen. Back to the hospital I went. This time, I left with yet another diagnosis, Addison’s Disease. Addison’s Disease is a rare autoimmune disease where the body produces insufficient amounts of certain hormones, such as Cortisol. I learned that your body needs Cortisol to control your blood pressure, nervous system function, metabolism of fats, carbohydrates and protein, and stress response. I also learned that Addison’s Disease often accompanies RA and is a chronic life-long disease that
requires taking medication three times a day. In fact, I have to carry a syringe with me everywhere I go in the event I can’t take my medication orally.
After a few years of experimenting with different treatments for my RA and my other diseases, I am now 16 years old and I am doing great! I am still learning how to live my new life, but I am grateful that what I have is manageable and treatable. I have returned to most of my previous activities, I am doing well in school, and I am surrounded by people that love and support me in good times and bad.
Managing autoimmune disease can be challenging, but it can also be an opportunity to change your perspective to appreciate all of the things that life has to offer and all of the things you CAN do.
