The clock is ticking, so there is no time to waste.
After being diagnosed with Immune Thrombocytopenia last year, I went through a rapid transition. I lost friends, my job, my independence and financial security. I faced a disease that was trying to kill me, without much knowledge of what exactly I could do to control it. Deciding to use a drug off label put me in remission. That led me to travel to DC to share my success with Congress. I ended up being one of those stories that inspired change. My journey was presented during debate on the floor of the US House of Representatives the day before they passed 21st Century Cures, HR 6. I was flying high off the adrenaline of using my negative situation to inspire something positive through Congress.
In the melee of being diagnosed, getting treated and becoming an advocate, I decided to apply to law school. I figured out I could do more for the rare disease community if I had a law degree. I ended up being accepted into the same school my mother went to. Some of the same professors were there, so I felt comfortable knowing I was entering a place where people would understand the challenges I face. Unless I have blood gushing out of my nose/ears/mouth, you wouldn’t know I was sick. I still have reservations about meeting new people and trying new things because of my illness. Simply put, it is awkward to bleed in front of people, especially if they don’t know you.
Everything was running smoothly in regards to preparing for school. I’m working on filing as a disabled student for the first time. I have begun the process of accepting that I might need help when my disorder returns. It has become a movement of personal acceptance of my limitations, something that is really difficult when you’re stubborn! I managed to piece together a small introduction on our incoming class Facebook group. The difficulty of describing my condition to people I would be going to school with should have been my first warning sign. I have no problem talking to all kinds of people about being a rare disease patient, but how do I present that in an academic setting?
Last week, our assistant dean requested we send him a photo to use for an incoming student slide show. The photo should showcase your essence. My heart stopped, I was beyond confused. How do I know what my essence is? I knew what it was before I got sick but I am not the same person anymore. Then I started to wonder, how would others perceive me based on my photo? Would I be the “sick girl” if I chose a picture that would highlight something I do with treatment. Would I be considered a liar if I chose a photo that hides my health issues? I started to panic, I wasn’t really sure I knew my essence or how to display myself to people who would have very little understand on what life is like being a rare disease patient.
The request made me realize that while I made great strides to grab ahold of my life after it began spiraling out of control, I didn’t really take the time to reflect on self-identity. I have a lot of titles: advocate, blogger, law student, but I couldn’t really say who I was at my core. I had to reflect, search within myself to see what my essence is. I could eliminate a few things pretty quickly. I am not a party animal; I am not a fashionista (unless you count a fabulous collection of yoga pants) and I’m certainly not a beach bum. I considered everything I have done and experienced over the last 14 months since being diagnosed.
It finally hit me; at my very core I am a fighter. I always used the term warrior because you have to be a warrior to fight against chronic illness. I pushed my limits physically, emotionally and mentally in a very short time. I don’t want my suffering to be in vain. If I can help save one person from the despair and isolation I felt after being diagnosed, I consider it a win. I have had challenges; I have had people tell me “no” on more than one occasion. So I step back, regroup and go in for the next round. So far, I’ve been victorious 100% of the time.
While I don’t know exactly what photo I will choose, I now realize my essence as a rare disease patient. I am a fighter; I work hard every day to establish my new normal while living with a rare disease. I fight for people like me who may not be able to leave their house, or are stuck in a hospital hoping that someone, somewhere, will find a treatment for them. I’ve also decided not to care about what my classmates think, as they will come to understand my world over time. My focus now, is getting through these next three years so I can really dig into the rare disease space to make an impact. The clock is ticking, so there is no time to waste.