July is Disability Pride Month. I want to shine light on how undiagnosed disabilities are so invisible. In the middle of the mystery our access to services and supports is almost non existent as well.

When people don’t know what to call what we have it’s hard to get the right supports. Lack of access to the right doctors also impacts this as well.

I live in a rural community. I don’t drive because of my undiagnosed disabilities. I can’t travel on my own to Cleveland or Toledo to see specialists and my world is exhausting.

A few days after I was born, I had a bunch of seizures. I saw specialists in Nuerology and Epilepsy as a child and everyone just said I had Epilepsy.

As an adult, my new doctors tell me they are not sure that what I have is actually Epilepsy or Seizures. I have all the symptoms. My seizures happen 30-40x a day . They are very short seizures.

Going from pediatric care to adult care has been so hard. The local doctors here treat me like it’s in my head. The field of care just stopped caring for me the same way now that I am an adult. I went from being diagnosed with epilepsy to being stripped of the diagnosis being told you were misdiagnosed and you likely have PEDS but honestly we don’t know for sure.

I feel like my world is invisible and there is a missing piece to the puzzle in figuring out what exactly I have. I don’t know many people who can relate to what I am experiencing. I am hoping maybe if I write this blog about Disability Pride month maybe I’ll find some people who can relate.

I still believe I have Epilepsy . I had years of care that proved that. It’s crazy how now that I am adult I am suddenly pushed out pediatric care. These new doctors don’t understand me or my conditions . They say that I never had epilepsy. This is now a giant black cloud in my world.

It tampers my ability to get services and supports in place. I don’t know how to fix this system. Transitions from pediatric neurology to adult neurology shouldn’t flip your whole world upside down.

I can relate to the rare disease patient who is fighting to get old misdiagnosis off their record. I am fighting to keep the diagnosis of my childhood with me as I am new to adult care.

I live in world , that doesn’t do well with transitioning people from pediatric care to adult care. I feel like my disabilities are invisible and now I feel like I fall into space of undiagnosed because my adult doctors some how don’t see the same thing that my pediatric doctors once did.

Living in a rural community where access to specialists is limited I find that my advocacy needs to be around transitions from pediatric care to adult care for people like me in rural communities. I feel like it shouldn’t be this hard.

I am determined to understand my condition better. It’s hard to figure out the mystery in the moments of being limited because of where you live and the availability of services.

I want to say that Disability Pride is trusting your gut, not taking what one person says for granted and advocating for better access to healthcare for everyone. Being in rural community shouldn’t limit one’s access to care.