The story of Jacqueline
She did not have a name for the longest time; all I knew was that she brought a pain I never knew existed. She would linger in the back of my throat, between my bones. She would build a house in between the lines of my mind and simply take over. She did not have a name, and yet she was there all the time, slowly becoming my closest companion. She would go wherever I went. Sometimes she would raise hell, and sometimes she would disappear for a while – only to return stronger.
Let me tell you about her. Or maybe them.
Disclaimer: This is probably going to be the most vulnerable that I have been in a long time, so bear with me.
I do not know when I first felt her presence. It is like she has always been there, growing with me, and the older we got, the fiercer she became. Ironically so, because when I was young, I was like a gentle, shy butterfly that wanted nothing but to be loved and to love. Especially since I was heavily bullied, and home honestly was not the safest place either. Some years are kind of a blur, some are not worthy to talk about right now – but what is worthy of talking about? The vivid remembrance of her being present. Of her giving me comfort in my discomfort. You probably think, who is she? – be patient, we will get there.
The older I got, the more I felt uncomfortable being in my own skin. I never knew what it was. Was it simply the lingering taste of what everyone put me through? Was there something wrong with me? I would get depressed, fatigued. I would find my legs cramping and hurting. My wrists were sensitive. I knew my body could not handle a lot, but yet I always tried.
I do not remember how old I was at the time, maybe 13? But what I do remember is that the bullying got worse, and the more anxious and stressed I got, the more my body would react. I remember I was living in my childhood home with my father at the time, and there was one morning I was walking down the stairs and he asked me, “Are you not going to school today? Again?” And I simply responded with a “No” because what else was there to say? I did not know how to explain what I was going through. At age 16-17, I had a hard time getting out of bed most days. I was living in a group home at the time and was still required to attend school. When I turned 18 and moved out on my own, it became even more difficult. I remember hearing people talk behind my back, calling me lazy and accusing me of skipping school because they would occasionally see me in the city. Little did they know, it took all of my strength just to take the bus and go to the doctor. His office was located near the cathedral in the historic part of the city where I lived. I enjoyed walking on the cobblestone streets, listening to the bells chime, and seeing the nearby bridge with the river flowing peacefully. It made me feel like there was nothing wrong in the world. Unfortunately, my doctor was quite honestly an asshole who showed no concern for my well-being.
These experiences still haunt me. They shaped me.
Over the years, it only got worse. My mental health declined more and more. The pain I felt became more present. For a long time, I would wake up every single night, my legs cramping. Sometimes, I would wake up because I dislocated something in my knee and had to pop it back in. My legs were weak. My mind was throbbing all the time. I was sensitive to sounds and light. My period was the worst of all, taking me out for at least three days. I could barely function. It was simply a lot. Hell, you must be overwhelmed just by reading this.
Throughout the years and multiple different doctors who did not believe me, who did not care, who kept saying everything is “normal,” it is “all in my head”. There is “nothing” there. I had one doctor who said he had something in mind, but I would have to come back for some tests – he is not sure because it is rare. He changed his practice and I did not get to see him again. In 2022, I finally had someone listen to me. I was referred to a rheumatologist who was extremely patient with me. It did not take him long to diagnose me.
Diagnosis: Ehlers-Danlos Syndrome, hEDS, Hypermobile Ehlers-Danlos Syndrome to be exact. The way I felt after this diagnosis was weird. She finally had a name, and although she had been living with me for so long, I felt like she was a stranger out of nowhere. I almost believed all the other doctors that it was all in my head… but now? Now she actually had a name. She was still invisible but also not? Because for the first time ever someone else felt her presence.
I have been trying to fight her, and most days I am almost successful. Used to her tagging along – but lately? Oh, she has me held in a prison carved out of my own bones, unable to be fully myself. Covered in bruises of pain and wrapped in a blanket of anxiety with a cup of depression. A flare-up with a depressive episode. Spicy. I have been working extremely hard these past few weeks, trying to make the most of it while also listening to my body. And oh, it has been such a tough journey. I am incapable of attending my part-time job. I feel like a failure. It reminds me of school all over again.
I have been sitting in discomfort, trying to find comfort these past two weeks. Thinking, a lot. Anxiety has been yelling at me, so has depression, and oh, hEDS? She has been the loudest of them all. She finally taught me that I have to accept her, fully, wholeheartedly. I have to accept that she will always be by my side. I have to accept that I simply have to find a way to make it work, no matter how.
So all I know right now is that the stranger who lives between my bones is the best friend I hate. She will hold a knife against my neck if I do not do what she wants. She will be in charge, no matter what.
So this? Art? My thoughts and emotions dangling between the canvas and finding a place to rest? It is not only my comfort zone, but it quite honestly is also the only way I will be able to financially support myself long term. Working remotely, with the flexibility to rest and take a break when she raises hell.
This, this is all I have.
Thank you for reading, for allowing me to take up space and be my unapologetic self.
Side Note: If you can relate to my story, I send you the tightest hug.
Love,
Jacqueline