It’s OK Not to Be OK

December 12, 2018
This story took place in United States

Emma is one of the oldest and most treasured members of the BTWF family.

I’ve had the honor and privilege of writing numerous blogs for Born This Way Foundation. Many know a portion of my story, but today, I am sharing a part of me that I am scared to death of. As I write this blog, I’m wrestling with my own feelings: when people read the words “I am disabled and depressed,” what will they think?

All too often, the juxtaposition of disability and mental health–particularly those with severe physical disabilities, such as my own–is incredibly stigmatized. The “be strong” mentality is rampant among the disability community, both by society-at-large and sometimes disabled people themselves. I know – I forced myself to conform to it.

About two months ago, I was diagnosed with post-traumatic stress disorder (PTSD). Looking back at my childhood, the symptoms of PTSD–an anxiety disorder that manifests due to, as the name implies, trauma–were obvious, occurring as young as three. When I think back to three-year-old me, confused after undergoing massive hip surgery to realign both of my dislocated hips and being body casted, I think of a child who is physically and mentally broken. One who feels out of place and misunderstood. Since then, I’ve had around 30 surgeries and procedures.

Later in childhood, I avoided hospitals, physical therapy, and sometimes even my own body in the mirror. By society’s standards, I found my body to be grotesque and less than. This was always exacerbated by medicine and in particular, any procedure that made me look or function at a different level than what most people were accustomed to. Many times throughout childhood, I would have massive, sometimes life-saving procedures and with that came an incredible amount of anxiety. I was always terrified of the stares. Of the constant, never-ending stream of “what happened?” During difficult periods of recovery, I would become reclusive – going so far as to hide from my own family. Even in adulthood, I experience a lot of the same triggers. I’ve had flashbacks, for example, and have a majorly warped body image.

Research shows that those with developmental disabilities are more likely than their neurotypical peers to experience trauma. This can be for a number of reasons, including neglect, physical or emotional abuse, or, you guessed it, invasive medical procedures. And yet, despite the fact that I constantly validate others’ feelings, I continue to deny my trauma and my PTSD diagnosis. I constantly minimize what happened to me as though I didn’t do enough to “earn it.” When I become triggered, I wrestle with the thought of being a burden on my family; with it being “my fault.” I wrestle with the thought that in childhood, I didn’t do enough to make it better. “Maybe,” my mind says, “had I done more then, I’d be more able now.” Maybe, I’d have more worth. More to give. Maybe, I’d be able to think more positively like so many others who have similar diagnoses, who say they never feel sad. Maybe, I could be strong and fit the mold that so many people see me as.

Whether we realize it or not, there is a very real and toxic mentality that those with disabilities and/or chronic illness should not or do not feel negative emotions connected with their diagnoses. What I’ve realized now is that I am entitled to those feelings. Just as anyone else, I am entitled to my humanity.

And so are you.

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