I am a rare disease patient with multiple diagnoses and still no underlying condition. I spent quite a few years in advocacy and have an overall sense of the health care system that many patients do not have but struggle still with my own self worth, despite my successes. I’ve had to pass on medications in the past because I could not afford them. I choose my drugs based on what I can afford sometimes have to make decisions to cut one or another because of cost. Learning that a medication is too expensive, often has a disheartening effect and usually causes more anxiety as I try to work with my positions to find alternatives. Sometimes there are no alternatives and I end up just going without. It’s been 48 years, and I’m still undiagnosed. We have over 30 conditions listed in my chart but no underlying cause has been found yet.
I felt alone for a long time and in fact I still feel alone but I realize that I have built an amazing community of patients, caregivers and allies who know the struggle and understand, and are open to my perspective. These people have become more essential than my own family. It took a long time to build my community and to find those patients who were empowered to take charge of their own conditions, but I feel like I’m in a good place now. Finding mentors in different spaces also helped to build my community.
Reorganizing patient advocacy organizations to truly benefit communities in different way is needed, and I hope to see patient organizations taking a more active role in research and development so patients will not struggle with not understanding the underlying cause to their pain.
