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There are so many times where I’ve been to a doctor’s appointment, emergency room, etc. and the physician uttered the phrase I dread the most, “There’s nothing we can do. You are too medically complex.” It’s disheartening when the people who are supposed to help you, can’t. When you are told this news by a doctor, your physical problems do not subside. In fact, most of the time they get worse because you’ve received no treatment. Mentally, you may get wrapped up in the guilt of being ‘untreatable.’ You start questioning yourself and your symptoms.
It took three years and eleven different departments in a nationally-merited hospital for me to find someone at a rival hospital twelve hours away that could help me with just one of my issues. By the time I finally found someone who could help, my symptoms had gone from painful to life-threatening.
If more doctors were aware of EDS and the many conditions that often coexist alongside it, I might have been able to find a better treatment plan to manage day-to-day life before my condition took a turn for the worst. This is why I choose to share my story and bring awareness to my conditions.
While EDS takes no days off, May has become one of my favorite months of the year to show that this disorder has not broken my spirit. This year, my boyfriend/caregiver/quarantine buddy, Sam, was able to use his talents as a gamer to bring awareness to EDS and to HSD. His older brother and friends joined in as well.
No part of my situation has been easy for Sam. Sometimes it’s been absolutely terrifying for him. There are days where my medical conditions make it rough for both of us. I can only imagine how hard it is to watch your significant other’s health decline rapidly. But he handles it with such strength; I will forever be inspired by him.
Whether at work or just out in public, Sam has taken the initiative in spreading EDS awareness verbally year-round. When I asked him why he decided to join me in my official May awareness-spreading endeavors, he said, “It’s so hard for me to see you in so much pain and not be able to do anything about it. I can’t stop your pain and that has always broken my heart. But helping spread awareness was something I could do for you and people like you. In a small way, I could help.”Tags: advocacy and support, awareness
Categorized in: Stories