5 New Doors That Opened for Me Because of Ehlers-Danlos Syndrome


I can confidently say that this past year was the worst of my life. In one year I have had almost all physical activity become an impossibility, and I have developed chronic pain due to dislocations. My condition is Ehlers-Danlos syndrome (EDS), and it has completely changed my life. I went from cheering on three teams a year to having to gauge if I have enough energy to do something as small as paint my nails. While chronic dislocations/subluxations have turned my world upside down, I now see that the new direction my life is moving in is much better than my previous path for these five reasons:

1. Without physical activity I have a lot of free time to develop new hobbies. This has led to me becoming more involved in both my school and community. Once I found out that cheer would not be a part of my future, I really had to look at my life and figure out what I enjoyed beyond that. Since then I have coached cheerleading, started a sign language club, learned sign language, became involved in special education, became involved in politics, and have done community service. While I loved my sport, I don’t believe I would have ever felt as happy as I am with my life now. It was all about my perspective. I learned that if I couldn’t do what I loved, then I could find something new.

2. I believe that this illness has also built my character. I have built so much compassion in last year both by becoming involved and by learning to understand invisible illnesses. I now understand that while someone may look healthy, they may be suffering from a disability just like myself. While some with chronic illnesses feel depressed or anxious, often invisible illnesses cause a person to be much more understanding towards others.

3. My EDS has taught me how to identify and remove myself from toxic relationships. Soon after the onset of my symptoms many friends abandoned me due to the inconvenience of my illness upon them. I have learned from these experiences how to identify people who are not in it for the right reasons though. It has been rough to separate myself from these people, but I am grateful to understand who is not a real friend through my condition.

4. I have been introduced to a community of understanding people. While I have been warned against this by multiple doctors and psychologists, recently I have joined multiple EDS groups on Facebook, and I have no regrets. I have made new friends who understand what I am going through, I can run symptoms by others, or vent about a long day. These groups are full of understanding and compassionate people that I would not have met if it were not for my condition.

5. EDS has broadened my future aspirations. If asked last year prior to diagnosis what I planned to be in the future, my answer would have been “Anything but a doctor or scientist.” Last year I absolutely despised science, but EDS has changed my perspective. I have learned that doctors and new researchers are so important, and I have built up a passion for these subjects. While my future is unclear, my aspirations are much broader due to my chronic illness.

Overall, I’ve learned that life is about perspective. So many of us with chronic illnesses are restricted both mentally and physically, but that does not mean you do not serve a purpose. When one door closes another opens, and I am so grateful for the new doors that have opened for me due to my Ehlers-Danlos syndrome.

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