In the last few months as I slowly get to know professors and administrators in my school, I have noticed a trend. I wouldn’t say it is an academic thing, or law school related, rather it is just ignorance. When I express my motivation (or insanity) behind deciding to go to law school such a short time after being diagnosed with my rare disease, I’m met with a strange reaction. Everyone says the same thing except in different ways. It boils down to, be passionate but focus on your studies.
People who aren’t rare disease patients/advocates are probably wondering why I find fault in that statement.
It is simple: this IS NOT about passion. I am fighting for my life.
It isn’t easy to sit in front of someone and accept the battle they are facing. Death scares people, but those of us with a rare disease have a different relationship with life and death. There comes a level of acceptance, almost a certain level of maturity only achieved by those of us who fight to live a normal life. I didn’t choose to go to law school because I knew I would be okay and I could go back to just being me. I knew that in order to have a chance at living a full life, I needed to change the way the world works. A law degree will assist me in making the changes necessary to have continued access to the drugs that prevent me from succumbing to Immune Thrombocytopenia.
The thing is, I have a lot of other friends in my same position. So even on days when I feel like giving up, they keep me going. Some days I am ready to fight for me, and others I suit up to battle for my rare family. That isn’t passion, it is a basic human response to survival. I’m trying to survive just like every “healthy” person out there, only the rules I play by are very different.
In time, I hope to educate people on their ignorance, because this is the kind of thought process that delays the developments necessary for improvements in healthcare. I’m fighting for myself and my rare disease family to have the chance to live like healthy people do. The very same people who wrongly judge this as a journey of passion.
I am in pain every day. I fear that my disease will return and take my life every day. How exactly does that equal passion?
I came to fight against my rare disease and defeat the roadblocks that prevent rare disease patients like myself from having access to life-saving treatments.
Those roadblocks are created by “healthy” people.