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Rebekah's story

When I was a child, I dreamt of exploring far away lands, of digging up dinosaurs and ancient greek pottery, exploring temples, and discovering never-before identified species of dinosaurs from a single bone (7 year old me did not, in fact, know that archaeologists and paleontologists were not the same, but I digress). Now at 22 years old I look back on a child who escaped a neglectful and often abusive home situation by dreaming of the day a museum hall would be named after them. I don’t want to establish myself as someone who was never loved by my family, but my mothers addiction has overshadowed a great deal of the love I experienced in my life.

Oftentimes, when people experience developmental trauma the entire physiology of the body and brain is affected well beyond what most General Practitioners, teachers, and guidance counselors understand. What they saw as a troubled child who wanted attention was in reality a teenager who suffered from chronic pain resulting from abuse, and had reached the point of total and complete burnout. At 15 I was sent away to be victimized once again through institutional abuse brought on through the Troubled Teen Industry, where my chronic pain and fatigue symptoms became exponentially worse (shocking, I know), at 17 I “graduated” from one institute and two months later began my life as a legal adult, overmedicated, with no viable social skills to speak of, and without the trust to do anything (even hang out with friends or god forbid go on dates) without supervision. While I’ve been in therapy most of my life, I’ve only been in effective therapy for a few years. With the help of Erica, my own personal superhero and cheerleader, I’ve been able to advocate for myself and actually get a diagnosis for the condition I have been suffering from for over a decade. Fibromyalgia is more likely to occur in patients who also experience PTSD, something that made total sense once I was diagnosed. Walking into the rhyematologist's office and being told point blank that I had a “textbook case” while I had been fighting for years to be taken seriously brought on both relief and extreme anger. I finally had a label for symptoms that I had been told were all in my head, but I also felt so much anger for the kid who spent years begging for a doctor to take me seriously. My symptoms were dismissed over, and over, and over again - no one could recognize the signs of the abuse I was suffering from, and when I tried to get help for the damage that that abuse brought unto me physically, I was dismissed.

A photograph of Rebekah posing with a flat lay of medicine and mobility aids.

I’ve had to grieve a lot in my life, the child who I was, the adult I wanted to be, the straight-A student, the voracious reader, the active athlete, so much was lost to me because of my chronic illnesses. When I think about everything I’ve lost out on because of chronic illness, I often struggle to honor the grief I feel without falling into despair, or bottling everything up and engaging in the toxic positivity that plagues every space of pain and suffering in the world. Even worse though, would be to continue to exist in silence - having my suffering dismissed over and over again, to feel that burning invalidation that I forced myself into accepting as my reality. To never speak of my grief and pain would be to continue to exist in this world of silence, and I refuse to become silent again. But then, how do I honor my grief, how do I acknowledge pain and suffering without spiraling into unending anguish? I wish I had all the answers to these questions. I wish I could take away not only my pain but also all the pain in the world. What I do know, is that by sharing my story I destigmatize those who suffer from developmental truama and all that comes with it. I hope that I can encourage people to have hard conversations, to see through the messy rooms, the endless sleep, the truancy, and failing grades. While discussions of chronic illness and its less than glamourous reality can be difficult, my hope is that my continued honesty about my reality as a chronically ill person can help challenge stigma, and maybe, I can help someone feel less alone in their own struggles.

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