In high school, I was a typical teenager. My days consisted of studying, participating in school clubs, spending time with my friends and looking forward to college. Just like my friends, I liked dressing up and getting my hair done for special occasions. That’s when it all started. Right before my high school graduation, my hairdresser noticed a bald patch on the back of my head. I was panicked. What started as a normal day - an innocuous trip to the salon - ended up being the trigger for something much bigger. In the blink of an eye, my life was about to change.
This bald patch was the start of my personal medical mystery. My condition quickly worsened and evolved in to swelling throughout my body, lesions and sores on my scalp and further hair loss. I was extremely tired all the time - sleeping considerably more than a normal teen. My parents became extremely concerned.
What was happening to me? This was a time I should be enjoying my high school graduation and starting college – not sleeping the days away while in almost constant pain. I went to countless doctors’ appointments trying to get an answer. Finally, after six months, I was diagnosed with an autoimmune disease called systemic lupus erythematosus – or lupus.
My family and I were scared and confused. None of us even knew what lupus was at that time. We quickly discovered that many healthcare professionals didn’t understand the complexity of this disease that impacts so many organ systems. Lupus, which remains hidden, invisible and misunderstood, was taking over my life. It became clear early on that I needed to become an expert on my condition so that I could advocate for myself. I was lucky to have the support of my parents every step of the way.
While my friends went off to college, I stayed behind. Lupus is completely unpredictable -- one day I was fine and the next day I wasn’t. For a time, I was mostly bedridden due to the extreme pain, fatigue and serious skin lesions all over my body. I spent one winter barely unable to wear normal shoes because my legs and feet were so swollen. I felt like an 80-year-old in a teenager’s body.
With the best of intentions, my doctors tried many different medications – oral corticosteroids, immunosuppressant drugs, even chemotherapy medications - you name it. But nothing seemed to work for me long term and the side effects were terrible. I was told this trial and error medication method is common with lupus patients, as there are so few drugs approved specifically for this disease, with symptoms so different from patient to patient, and day to day. I ended up hospitalized several times, for weeks and even months at a time, always with my concerned and frightened parents by my side. My parents confess now that at one point, they did not think I was going to survive. My situation ultimately led to me become severely depressed. I desperately wanted my pre-lupus life back.
Turning fear in to hope
Today, with the help of my current rheumatologist who is also working to investigate new lupus treatments and the support of my family, I am doing much better and have hope for the future.
Since lupus is such an erratic disease, I used to wake up every morning afraid of what might be in store for me. My life was a constant roller coaster; the uncertainty affected everyone around me, especially my family. Every time I called or texted my parents, they assumed something was wrong and immediately went in to worry mode. The best part of my life today is the ability to plan and not live with a constant fear of flare-ups and hospitalizations. I go to work, even though I am part time. I can plan a weekend trip with friends, even at the last minute. I can buy concert tickets in advance and not worry about how I will be feeling that day.
Advice to others with lupus
Throughout this journey I’ve had to listen to myself and my body, knowing what I can and can’t do, which is so important. Lupus is frustrating and not well understood so it is important to have people you can talk to about it, people who understand. It is also important to find a doctor who is knowledgeable about lupus specifically and to continue research into new and improved treatments.
Lupus may have taken my life off course, but I keep moving forward. I have a new hope and excitement for my future and for the future of lupus. I can’t wait for positive experiences ahead, whether planned or unplanned.