Snap. Crackle. Pop.
My joints sound like a rice crispy commercial as they perform a series of dislocations and subluxations. When did I turn into this person? When did I turn into the girl who could barely take the stairs or walk down a hallway? When did I become so sick?
The truth is that I’ve been this girl for almost a year now. Last year my world turned upside down when the first doctor uttered the words “Ehlers Danlos Syndrome” which would later be followed by celiac, hemiplegic migraine, chronic fatigue and POTS diagnoses. On January 19th, 2016 my knee dislocated at school, and putting this together with two shoulder surgeries my orthopedic finally decided on EDS as my diagnosis.
The truth about a new diagnosis is that it seems impossible, it takes time to accept, and it will forever change you. The first feelings at diagnosis were relief. I had always had tendinitis, joint hypermobility syndrome, and I was accident prone, so this diagnosis made sense. I went home feeling like I finally had the answers I longed for.
Then came the grief. It hit me like a wall as I sifted through resources on Ehlers Danlos Syndrome and its comorbidities. Words stood out to me: aortic rupture, stroke, seizure, and a slough of other conditions that would scare anyone. I feared the worst for a while, walking around life never knowing when I would collapse of a heart attack or brain issue. The truth of the matter is that I don’t know what my future looks like, but now I try not to worry about it. I know that having my own children is not realistic and that my life expectancy is not what it used to be, but I try to live in the moment.
My illness gave me a new lease on life. I learned that you never know when things will change in your life or when you will become very sick, so you have to live while you can. Coming to this realization turned me into a completely different person. I am more confident, happier, and I am mentally healthier. It seems ironic that when I became physically ill I became happier, but for some reason that is how my life has worked out. Don’t get me wrong, I still have bad days when the pain is so bad that I want to die, but I also have days where my life makes me feel happier than I ever imagined.
I learned that people will judge you for everything in life. They will pick you apart and give you a hard time for the things you cannot control, but the right people will not judge you like this. I lost all of my closest friends after diagnosis. I was called a liar, a faker, a phony. I heard whispers about me in the hallways of my high school, and I was miserable. I had lost not only everyone I trusted, but I lost myself. Pushing past the stares and pointed fingers though, I grew as a person. I came to that realization that I should be living everyday like it’s my last, and I started. Every day I look in the mirror, and despite fighting with my body every day I love the person who I have become. Over the past year I have turned into a writer, an advocate, a spoonie, and above all I have become a more passionate person.
Being chronically ill young is hard, I am not going to lie. I could go on and on for days about the positives of my illness, but I also could go on and on about the negatives. I am constantly tired, in pain, dislocating, but I take it one day at a time. There will always be rude people in high school who will scoff at my elevator use or judge me because I am sick, and every day I will be conscious of these people. They don’t realize it, but I see every pointed glance and I hear ever chuckle over my braces or sly comment about how I’m too young to be this sick. The truth is that I wish I was too young to be this sick. I wish that I was too young to live with my pain at a 6-9 daily along with syncope, nausea, migraines, and a million other symptoms. Yet, this is the situation I am in, and the only control that I have is how I handle what life throws at me.
Spoonies have two options: give in when life becomes difficult or take it as it comes. I often cannot do the latter. New diagnoses, intense pain, and drama have made it difficult for me to accept my reality at times, but I always seem to make it out the other side. It may become tough, but the truth of the matter is that while you are not your illness. You can still do great things. Become an advocate, write about your experiences, spread awareness, and above all, never stop fighting.
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