I turned eighteen yesterday. And I think it goes without saying that if youāre familiar with what the past five years have been like for me, then youāll understand Iāve gone through a lot. I could narrate and depict all the horrible experiences and Iāve had over those years, but I canāt be bothered to. But not for the reason you might think.
Late last year I was completely and utterly lost. Iāve always heard stories about people losing themselves, but I never thought Iād ever relate to them. The entire concept of losing yourself seemed foreign, I mean I was so certain in who I was, and what I believed in. I mean that has to mean Iām immune to losing myself, right?
Nope. And how I found myself there wasnāt just a random event, where I one day woke up and didnāt understand who I was anymore. No, it was a chain of events that perfectly aligned that allowed it to happen. A negligent society and a pain riddled body are the perfect recipe to create the downfall of anybodyās psyche.
Five years of negligent doctors, misdiagnosis, disappointments, gaslighting, sleepless nights, endless pains, lost experiences, and progressing symptoms all weighed incredibly heavy on me. The combination of those things led me to enter a space I have never been before, and one I wholeheartedly hope you never find yourself in. A space where shadows and nightmares lurked around every corner. Where the foundation cracked and the ceiling caved in. Where the air felt tight, and the walls narrowed in. Where the strings of others actions puppeteered me, and the voices of others seeped out of my lips.
I found myself at the mercy of this space, and losing myself at a rapid rate. Not only did the activities that bring me joy slip away, but my soul started to as well. I found myself stuck in a psychological warfare situation, torturing my mind, body, and soul with the cycle that seemed to never end.
A cycle of symptoms appearing, no answers, countless dismissals, constant unknowns, no resources, complete denial, and traumatic appointments. A cycle I continuously found myself in. A cycle I thought I had escaped at fifteen, after fighting with everything I had and more to regain the ability to walk and function again. A cycle I thought I had broken at sixteen when I finally got an answer and prescribed medication for. A cycle I found myself in again at seventeen, only this time it seemed to never have an end in sight.
Itās impossible to not question yourself, when so many tests and doctors all conclude thereās nothing wrong with you. And in this space this feeling of rejection and disregard had me questioning my own sanity. I started to blame myself for everything bad that had happened to me. I came to fester such hatred towards myself and my body that I couldnāt even look in the mirror anymore. The reflection of the shell of who I used to be is painful to witness. I mean after all, my body had become the source of all my pain and issues in my life, it almost seems logical that Iād eventually grow a hatred towards it eventually.
It didnāt help that plastered on the forefront of my mind were the pictures of other kids my age simply just living their life. Constantly comparing myself to their successes, and blaming myself for not being able to achieve the things they were able to do.
It seemed like I could never escape the what ifs, and the whys. No matter how hard I struggled against the shackles these questions contained me in, they would always win in the end. Dragging me down further and cementing my spot in this new and treacherous space.
I was in a purgatory-like state. Waiting for the right diagnosis, waiting for the right person to help me, waiting for options, and waiting for resources. I had been fighting so hard for five years to get the help I so desperately needed, and it wasnāt being reciprocated on the medical systems side. So, I gave up all and any hope I ever had. I had gone through so much heartbreak at the hands of medical professionals my mind shut off completely to spare me the pain of it all.
The days during this period I canāt really recall. I was operating on autopilot, I was just trying my best to stay alive. I stopped writing, I stopped drawing, I stopped learning, I stopped doing the things I loved the most in the world. I had allowed the pain and symptoms to completely take over who I was and who I am as a person.
Fast forward to a day in early November, and for the first time in a year a sliver of light managed to break through that dark and dehumanizing place. A diagnosis. A resource. Options and directions. A doctor who understood and validated me and everything I had been through. I walked in those office doors hating the idea about even being there, and I left with a feeling I hadnāt felt in months, hope.
I broke down on the curb outside and cried. Five years worth of tears came sprawling out, five months of pain, sorrow, and grief that all couldāve been prevented had someone had known what was wrong with me. I cried as the weight of am I crazy was lifted off of me, and for the first time in a long time I felt like I could breathe.
Something I wish people in our society understood is when youāre navigating a medical system that is set up to fail people who have multi-systemic disorders or illnesses, is that the diagnostic process and the uncertainties are a million times worse than the physical symptoms I have to deal with daily.
After that day in November I realized I wanted to pull myself free from those dark and decrepit walls that space confined me to. I wanted to heal myself, my mind, body, and soul. And that meant I would have to put so much work into escaping and not letting that space become my permanent residence. I couldnāt and wouldnāt let myself be defined by my diagnosis and symptoms anymore.
I turned eighteen yesterday. And I can confidently and proudly say I am not in that space anymore. Through therapy and doing my best to heal myself, I am in a much better place.
I realized that the way I would talk to myself and belittle myself, I would never do to someone else. So why was it okay to talk to myself like that? I realized that I was stuck in a mindset of self-pity and feeling less than just because of my disability. But I would never think that of others who also have disabilities, so why was that okay to think of myself like that? I realized that this is the only body I will ever get, and to fester so much hatred towards it seems unfair. Everyday in this life is so precious and not guaranteed, and living a life of hate, whether it's towards yourself or others, isnāt a fulfilling way to live. Thereās already so many heinous and horrific hate filled acts in this world, why should you add onto it, when you can choose to spread love and warmth? Why add to the problem when you can easily help provide a solution.
I used to be laser focused on the future, always planning perfectly to a t how I wanted my life to play out. And when the fantasy I had created for a future me became my reality and it didnāt match, I didnāt know how to handle it. I was always in a state of fearing hypotheticals and situations that would pop into my mind. And when that didnāt work out well, my mind found itself reminiscing on past traumatic events. I was stuck in a place between the future and past, and not focusing on living in the present.
I realized that itās not worth worrying about the future, because the what ifs and the hypotheticals you create in your head might not even become your reality. And if they do, then youāll figure it out in that moment. I realized that you canāt change the past no matter how much you want to. And I realized that there is nothing you can control other than what you do now, in this moment. And thatās all that matters.
I realized that to fully love and know myself I had to learn to love and accept the diagnosis and illness that caused these chain of events in the first place. Itās not going anywhere, itās my scary ominous companion that's glued to my side. I might as well put a pink bow on it and try to learn to love it. And for a long time the thought of loving and accepting the thing that caused you so much pain seemed impossible. But I can confidently say that I do love it, in my own weird way.
I also realized that thereās no point festering hate and blame towards my body, because I was simply born with faulty wiring. Itās not my bodyās fault, and itās not my fault. My body is simply trying its best to hold me together, and for how hard my body works to do that I am so proud of it for. I canāt change the cards Iāve been dealt, I can only change how I play the game.
I turned eighteen yesterday. And I am in the healthiest space mentally and soulfully Iāve ever been in. Maybe not physically, but we're doing the best we can haha.. I am a whole person outside of my illness, but Iāve also learned that denying that my illness is a part of me only ends up with negative results. It is a part of me, but itās not me.
I am an old soul. I love to get lost in a good book. I love to articulate an idea I had in my head into words. I love to create art out of a blank paper with my own hands. I love to learn about our world and the history behind it. I love to get sucked into a catchy chorus and dance around in my room. I love all things pretty feminine and delicate. I love that I find the beauty in all broken things. I love dressing up and doing my makeup. I love to advocate and provide a safe space for people. I love, love. I love to have such a deep sense of empathy and compassion towards everyone. I love that I am a positive light in this dark world. I love that I have the ability to step back and see a situation from all different perspectives. And I love that I love myself.
Getting myself out of the deep end, to where I am now was not easy. But I am so proud of who and where I am today. Everything happens for a reason, and even though these health issues are annoying and cause me so much pain, maybe I have them for a bigger reason. In the grand scheme of things maybe Iām supposed to have these diagnoses for some reason.
I think and firmly believe that one of the greatest blessings in this life is the ability to help another human. In any shape or form. And Iāve always felt like I was put on this earth to help other people. I mean when I was twelve I organized an entire presentation for my entire grade on mental health disorders and how to recognize some of the signs. And maybe by me having hypermobility ehlers danlos syndrome, post orthostatic tachycardia syndrome, mast cell, amplified musculoskeletal pain syndrome, chronic regional pain syndrome, function neurological disorder, dysautonomia, generalized anxiety disorder, depression, and ocd, maybe I can use these things I used to consider burdens, to create something positive and helpful.
If Iām able to help just one person in this world, in any shape or form then I would be content and proud of the life I led. And while people might think itās noble that I want to do this, I just want to make it clear that Iām not doing this in spite of my disability. No, Iām not noble for thinking like this, iām just simply being me. And no, Iām not doing anything in spite of my diagnosis, Iām doing anything with my diagnosis. Iām working hand and hand with them, and in return Iām more accepting towards them, and theyāre more gentle towards me.
I turned eighteen yesterday, and I am so happy. My main goals right now are to just work on healing myself even more, learning and listening to my body, and loving all the wonky weird bits that make me, me. Iām finally living in the present, I donāt worry about the future and wish I could change things about the past. Instead, I worry about what I could do now, in this minute to make me feel better. Whether that's picking up a pencil to draw, typing on a keyboard, watching funny TikTok videos, listening to my favorite albums, reading my comfort books, talking to my family, or even just simply taking a nap.
Iām focused on the current me, and what she needs. And I really love her, I truly do. And I am incredibly proud of myself for pulling me out of the torturous space, and bringing me to where I am now. Happy, content, loving, creative, artistic, wise, funny, compassionate, weird, wonky, rare, beautiful, me.