«I have FA, FA doesn’t have me.”
Ive talked to a good amount of people with FA about this and its a surprise to me that very few have similar viewpoint as me. But at the same time everyone deals with a chronic disease differently, so if you don’t recognize yourself in my viewpoint that’s ok too.
The past 3-4 years I have focused on learning to love myself. I think we can agree that FA, or any chronic disease for that matter, makes it difficult sometimes.
I was diagnosed when I was 9 years old so I had to figure out who I was while having FA, I am still figuring it out. I find it difficult at times because I can’t try out different sports. Maybe I’m really good at basketball or dancing, maybe sports isn’t my thing. Maybe I love iceskating or maybe I’m really good at playing an instrument. Am I someone who loves hiking or rock climbing? Am I one of those who can wear high heels for an entire day? Am I one of those people who needs to be reminded to take a break? Would I be an extrovert if I had energy? FA limits my knowledge of who I am.
When you’re young it’s normal to blame someone else for trouble you caused because you don’t have to face the consequences. People still does it as adults, blaming others for their own problems. When I was around 15 years old I started to blame myself for having FA. “Its my fault that my own body doesn’t work.” That was a conversation I had with myself a lot. There was nobody else to blame but myself.
But lately I have educated myself on FA, how the gene mistake works and also gotten some psychological perspective. Before I go any further I just want to get one thing straight, I will NEVER accept this pice of trash called friedreich ataxia. I see FA as “someone” I’m in a toxic relationship with. He makes me fall, gives me bruises, limits me, gives me a lot of psychological stress, makes everything more difficult than it has to be…
(I say he because Friedreich is a boys name.)
While learning to love myself I have learned that FA is not part of who I am. He’s just a chapter in my story. And most important is that FA is not trouble I caused. Its not my fault that Im constantly tired, Im not giving myself bruises, Its not my choice to sit in a wheelchair. Its FA. He’s not part of my body, hes just on tour…a very long tour. Its easier to love myself when I can blame FA for all my FA related problems. I am in a good relationship with myself, not with FA.
I can’t address this enough, the most important person to show you love, respect and kindness is yourself. Your opinion of yourself is the only opinion that matters.
How is your relationship with FA? Do you accept FA? Write your point of view in the comments!