Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I want to talk about the idea of identifying with our diagnosis. I have frequently been cautioned by doctors and able bodied, well meaning friends not to identify with my diagnosis. I find this strange advice.
Each diagnosis that I carry represents things that are happening with my body that are fundamentally a part of my life. I cannot separate myself from my Elhers Danlos Syndrome or my Autism any more then I can separate myself from the fact that I am a mother or a sister and each have impacted my life. Each have fundamentally effected the person that I currently am. How is acknowledging my EDS, by declaring myself a Zebra, or identifying as autistic anything other then recognizing the central part it plays in my life? How is it any more damaging to me then acknowledging my relationship with my daughter or siblings by declaring that I am a mother and a sister?
The thing is that each diagnosis is a part of my life, regardless of the relationship that I choose to have with that diagnosis. Denial of the diagnosis will certainly not make it go away. Acknowledging the diagnosis is required if one is going to manage the symptoms and engage in preventive care. Do those activities equate to identifying with a diagnosis? I certainly relate to others that share a diagnosis with me in a way that I don’t relate to others. But this is also true about relating to mothers. There are things that I share with these people that I don’t with other groups that I meet.
What I dislike about this cautioning me against identifying with my diagnosis is the suggestion that some how that identity is a bad one to have. And all I can ask in response to that assumption is: How so? What is bad about having the identity of a zebra? or a spoonie? or an autistic? What about these is bad? This caution feels like nothing more then ableism. It feels like a caution against being something different. It feels like a warning that not being able bodied and neurotypical is undesirable.
I am different.
And you know what? So is everyone else in there own way. That’s what makes humanity so beautiful. Let’s celebrate all our differences. Let’s celebrate all the beautiful and amazing colors in our humanity rainbow. Let’s stop building walls between us that don’t matter. Because that’s what this caution feels like to me.
I identify with my diagnosis and I embrace each of them as a part of who I am.
I wear my stretch marks and scars with pride. They are not beautiful. But they are the reminders of all the things that I have survived and a reminder that I am strong enough to survive the things that come next. And they don’t need to be beautiful because I can still be a beautiful person while carrying things on and inside me that are ugly. That is the amazing paradox of being human. We are complex and messy and unique and just like everyone else.
Having a disability doesn’t make me any less human. And choosing to embrace all of my humanness, including that which is considered a disability, does not make me broken or weak. Acceptance is allowing the self grace. And I choose to give myself grace and I struggle to find the answers in this infinitely complex life.
I challenge you not to reduce me to that which you can more easily tolerate or understand. I ask that you accept me in my totality, with all my strengths and all my weaknesses. I challenge you to recognize not only my failings but my achievements. I ask that you give me permission to be human.
Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!
Zebra Pig 