4 Reasons Why I’m Thankful for My Ehlers-Danlos Syndrome


During the week of Thanksgiving, we all tend to be more aware of the good parts of our life and appreciate them more. It’s easy to focus on the negative aspects of a chronic illness. It’s easy for me to say that Ehlers-Danlos syndrome has ruined the life I dreamed of having. What I’ve come to realize over the many years that I’ve lived with chronic illness and pain is that it isn’t all bad.

I know that sounds odd. What could be good about having a chronic illness? I wouldn’t choose to have Ehlers-Danlos syndrome. I would cure myself of it in an instant if I could, but I have learned to be thankful for other aspects of life due to the struggles and adversity I have faced because of my chronic illness.

1. I have learned to be thankful for the little things in life.

I’m talking about things like being able to laugh even though I’m in pain, feeling well enough to watch a TV show with my brother and the joy I get from having a dog. These things seem like nothing to other people, but to me they’re precious. I’ve learned that everything I’m able to accomplish and do even when I am feeling horrid is a blessing, and when I am feeling well enough and am able to accomplish more, I smile with the knowledge that my time is very precious.

I never know when I’m going to have another bad flare-up or when I’m not going to feel well enough to get out of bed. This is why the small things in life are so special to me and why I am so thankful for them.

2. I’ve learned to be truly thankful for the people in my life.

When I was a teenager and all of my symptoms first began to manifest fully, I lost all of my friends. None of them bothered to ask how I was doing or give me a call when I had to drop out of school and be tutored at home.

I ended up going to college with an old friend, and I rekindled a friendship with her for a while. But that friendship didn’t last. She didn’t stick around, and that broke me more than I think anyone knows.

I thought I would never find anyone who would want to have me as a friend. I always had to cancel plans and had to do everything differently than everyone else. I thought no one would want to deal with me, so I got used to being alone.

During my second year of college, I rekindled an old friendship with a guy who had been a good friend of mine in elementary school. He didn’t care about my illness. He even joked about it, which made me feel more comfortable in my skin. He also eventually introduced me to someone who is now my best friend. She was actually from the class behind me growing up. She never cares when I have to cancel plans and never makes me feel bad about the fact that I have to do everything differently.

I truly knew these two would stick around no matter what because they were the first ever friends to visit me in the hospital when I was going through a really bad flare-up. I’m still lucky to call these two — who have now gotten married to one another — my best friends. None of this would have happened if I didn’t have a chronic illness. I never would have found out what true friends are or have been able to develop such a deep friendship if it wasn’t for Ehlers-Danlos. And for this, I am thankful. 

3. I’ve learned to be truly thankful for family.

I bonded with my mother throughout the years due to my chronic illness. I always had to be in the hospital and had to have a lot of surgeries growing up. And she was there with me every step of the way. She’s still there for me today.

I also became very close with my brother who always does whatever he can to make me feel better and always makes me laugh even when I’m in pain.

I also bonded very deeply with my grandfather due to these experiences. He has since passed away, but I will never forget the things he did for me and the lessons he taught me.

My family was always pretty close, but I know that we wouldn’t be where we are now if it wasn’t for my trials and tribulations due to Ehlers-Danlos and Chiari malformation. I’m beyond thankful for this and will never take them for granted.

4. I’ve learned my true talent and passion of writing poetry because of my chronic illness.

When I began going through all these bad and painful situations at age 15, I began writing poetry about my experiences. I wrote as a way to get out the pain and anguish I felt. My heart wept through words and began to heal because of this. Within the past two years, I was even able to publish a book of my poetry — poems from when I was a 15-year-old girl up to now dealing with Ehlers-Danlos and Chiari malformation.

It’s my hope that I can help someone or at least show them they’re not alone through my poetry. I would in no way would have done this if it wasn’t for the fuel that my chronic illness and pain fed me. I would never have picked up a pen and put my feelings onto paper if it wasn’t for my bad experiences, and this is why I am thankful.

We often only think of the good things in our life during the week of Thanksgiving. I think about the things am thankful for each and every day because I have learned the hard way just how precious life is.

I urge everyone to always think of the good things that you have going for you. Always look for the positive aspects of any negative situation. It’s not easy to do, but it’s important to do. I’m able to lead a happy life because I’m able to be thankful about the things Ehlers-Danlos and Chiari malformation set into motion.

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