In order to think of what Cystinosis Awareness Day means to me I had to think about what cystinosis means to me. Cystinosis is a blessing and a burden. The blessings of it are not obvious growing up. There is physical, physiological, emotional, and spiritual scar tissue that forms and has to be acknowledged and confronted in order to be able to fully move forward with life. However, when looking back at my life with cystinosis, I’ve realized that without having it I would never have met some of the people I have in my life. I am more empathetic towards a wider variety of people then I think I would be if I hadn’t experienced what I’ve experienced. I’ve been able to develop patience and adaptability when it comes to difficult and joyous life circumstances. I’ve had to mature faster in some ways than I would have had to without cystinosis, but I’m thankful for my experiences because they’ve made me the man I am today- and I like I who I am. However, the persistent emotion I still struggle with on occasion is loneliness.
I’ve struggled a lot with the psychological and emotional issues of having a rare disease. I’ve been lonely and put up unnecessary walls between myself and other people. When I was a teenager, I rejected some relationships as a preemptive strike. I rejected them before they could reject me. To this day I occasionally still catch myself doing this. I have to consciously remind myself to give people a chance. I think this is why I’ve been reluctant to be completely open about having cystinosis with my non-familial relationships. Part of me still thinks that if I tell someone about cystinosis they will either define me solely as the guy with a rare disease or reject me outright. I know this is not the case on a conscious level, but I still have to train myself to fully accept the real truth.
I’m getting to the point now where if someone asks why I take the pills I take, I can be completely honest with them about cystinosis. When I’ve revealed this information about myself the reaction most of the time is shock at what I’ve been through and interest in what cystinosis is. Awareness of cystinosis is key to helping more people be treated and eventually cured of cystinosis. As a healthy adult with cystinosis I am well qualified to help spread awareness. I need to fully embrace my identity as an adult living with cystinosis to help spread awareness.
Cystinosis Awareness Day means having more doctors and people know about cystinosis. This will lead to more patients being diagnosed earlier and hopefully lead to a better prognosis. Increased awareness will also help us find a cure quicker. Most of all for me, Cystinosis Awareness Day creates the opportunity for us to find people and families with cystinosis and tell them that they are not alone.
Steve Schleuder