Invisible

I have an invisible disability. I don’t use a wheelchair or cane. When you talk to me, I seem together. My symptoms don’t raise red flags in others. But they are there.

I have three primary conditions. I have schizoaffective disorder – a severe mental illness. I have gastroparesis in which I have difficulty digesting foods and which results in chronic pain. And I have frontotemporal degeneration, a precursor to dementia. I’m aware of all three. My brain doesn’t work as it should nor does my digestive system. But that’s not obvious to others. They don’t see how hard I have to work at normalcy. I try to ignore the voices in my head and control the actions they want me to do. I lost 70 lbs in a year but got congratulated by others not realizing the intense pain I feel if I even eat a small amount of solid food. I pretend to understand what people are saying. I act like I remember things when I don’t.

I realize people are trying to be supportive. I don’t “look” disabled as if that makes a difference. It does not. Telling me I don’t look disabled doesn’t change my reality. It simply minimizes my struggle. It invalidates my experience. It puts me in this weird space where I have to “prove” I am disabled.

Here’s the truth: I’m in nearly constant pain, even when I’m smiling. I’m frequently suicidal as I battle voices that tell me to hurt myself. I don’t say half of what I want to say because I forget. What others see doesn’t matter. It doesn’t change my reality. And what people see changes. Once I was stabilized on medication, I seemed fine after years of being in a delusion where I thought I was literally in hell. I had gastroparesis for years before the weight loss made it obvious. And as my personality changes and memory loss becomes more pronounced, people will see that I do have FTD. The diagnoses won’t change. What people see will change.

I don’t just need support when my life falls apart. I need support as I realize my life is falling apart. Now is when I need understanding. I’m scared, frustrated and angry. That’s my truth and I’m not alone. So many others struggle just as much – if not more – than I do. Your denial doesn’t help. It only adds to our pain.

Photo by Edilson Borges on Unsplash