EDS Has Taught Me to Be More Positive

EDS Has Taught Me to Be More Positive
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I’m certain I don’t have to tell anyone reading this column that having Ehlers-Danlos syndrome (EDS) means overcoming a lot of hurdles and other negative things. These include chronic pain, fatigue, ease of injury, gastrointestinal issues, anxiety and other mental health concerns — and those are just the start of the list.

But as I’ve come to better accept my EDS over the past several years, I’ve learned that it can have some surprising upsides, too.

Don’t get me wrong, EDS isn’t fun, and there are times when I wonder what life would be like if I didn’t have it. But on the flip side, it has taught me some lessons, including realistic positivity, that I’m not sure I would have learned as easily otherwise.

For a long time, EDS did the opposite of helping me see the positives. I spent years in a negative mindset, unaware of how much my chronic pain and fatigue affected my mental state. I only recognized this after my diagnosis at age 22.

As I began physical and massage therapy, my pain level stabilized and then started to drop. I realized that my negativity strongly correlated with how I felt physically. I never knew how much pain I was actually in because I’d never felt any differently.

That probably sounds strange, but when you’ve only ever felt one way, you don’t know that it’s not normal. Only after I began to improve did it click with me just how much pain I’d been dealing with for years.

With the help of some incredibly patient friends, and later an incredible therapist, I started to reframe how I looked at things. When I would immediately jump in with a negative comment, they would gently prod me to find something positive in the situation. I realized after several months that I was slowly finding more positives on my own. Sometimes I even recognized a positive before a negative! That was a real turning point for me.

Finding positives in the world around me even led me to find small positives about my EDS. Because of my smooth skin, people often think I’m far younger than I am. Who doesn’t like that as they get older? I’ve also learned to better accept my bruises as simply a part of me rather than something that’s frustrating.

While these are minor things, as someone who’s become dedicated to finding positivity, that’s not what’s important.

Living with EDS undoubtedly has many downsides, but I believe that having experienced them allows me to better see the upsides in life.

I love quotes, and I have a notebook where I keep ones that really speak to me. One of my favorites is from Ruth E. Renkel: “Never fear shadows. They simply mean there’s a light shining somewhere nearby.”

It’s taken me a long time, but I’ve learned that looking for the light instead of focusing on the dark changes my outlook and happiness in ways I never could have imagined.

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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.
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An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.
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2 comments

  1. Cathy says:

    I was diagnosed with eds in my thirties. I am now 65. My legs look like a train wreck and I have dealt with chronic pain my whole life. Try to stay positive but get very depressed. I have so many things associated with Ed’s and worse with age. My doctor is wonderful but does not fully understand this disease. Please help me stay positive.

    • Karen Del Vecchio says:

      Hi, Cathy. I’m sorry to hear that you’re having a rough time. Life with EDS is certainly a challenge! It has taken me many years of concerted work to find a positive attitude, but some days are more difficult than others. For me personally I’ve found that recognizing the difference between “false positivity” (when people ignore the downsides like they don’t exist) and “realistic positivity” (where people acknowledge the hardships and how it makes them feel but choose to focus on the upsides as much as possible) to a game-changer. I realized that being positive doesn’t mean that I can’t get upset when I have a bad day, but that I get back to focusing on the good things once I’ve processed it. Also, please don’t hesitate to reach out to a trusted friend or professional to talk. EDS can be a very trying disorder, and reaching out when necessary is an important part of self-care.

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