Wrestling Blessings out of my Ehlers-Danlos Syndrome 

In many, many ways, 2016 did not go as I expected. 

Early in the year, it seemed to be going on a “normal,” whatever that means, trajectory. The end of 2015 was a whirlwind, as between Thanksgiving and Christmas I was hired for my dream job, and my family moved cities in two weeks time. In May, my husband and I both graduated with graduate degrees a day apart. It should have been one of the happiest times of our lives. 

But my health was a huge grey cloud hovering over 2016. I missed out on so many weddings and other celebratory events because I was too sick to travel. It put a huge stress on my family, marriage, and my own sense of self-worth and meaning.

 I thought finally after having a label on it–a fibromyalgia diagnosis, which later would turn out to be a misdiagnosis–would make things better, and it did, for a bit. But then, I tried to improve my life with dietary changes. They may have helped for fibro, but cutting caffeine sent me into a two-week-long worse-than-a-migraine headache because of my unknownst to myself Chiari malformation.

 Finally, in December, I was diagnosed with Ehlers-Danlos Syndrome and its partners in body-ravaging crimes, Mast Cell Activation Syndrome and Chiari malformation. 

So here we are, in the second month of a new year, a year where my word to focus on has been wellness. As someone who has been entrenched in deep faith her entire life and who went to seminary, has a Masters of Divinity, and works in ministry, certain biblical narratives have always resonated with different seasons of my life.

 One that is resonating particularly right now is the story of Jacob, found in Genesis 32:22-32. Jacob wrestles with a man, according to the narrative, and will not stop wrestling with him until he is blessed. It turns out the man was actually God, and God renames him Israel, which likely literally means “he who struggles with God.”

I also feel like I have been in an unexpected wrestling match lately, except my wrestling match lately has been with my chronic illness. And I’ve decided that if this is my fate, I’m not going to stop wrestling, stop fighting, until I get a blessing out of it. 

Don’t get me wrong, being chronically ill is hard, and it is up to the person who is chronically ill to decide on the reaction to their illness that fits best for them. Some people cannot find anything positive in their battles with chronic illness, and phrases like “look on the bright side” or “it’s a blessing in disguise” can come off as extremely insensitive and unhelpful. 

But in my own, very personal experience, I knew that I couldn’t lay down and accept defeat to EDS, Chiari, MCAS, any of it. I am going to take this lot that has been given to me, and I am going to do everything I can to wrestle blessings from it and focus on the lessons my disabilities can teach me. For me personally, this is the healthiest, happiest road to wellness in 2017 and beyond. 

To me, “wrestling a blessing” out of my chronic conditions means being very introspective and focusing on the positives: the lessons they can teach me, the ways I can grow as a person. I’m going to have these conditions my whole life, and so I am looking for ways to benefit from them, as really, really hard as that is some–OK, most!–days. 

So what blessings have I wrestled out so far? 

For one, knowing my conditions and having proper diagnosises has made me much more self-aware. I am learning my limits and my weaknesses, and how to take care of myself on both my best and worst days. I am also learning that I am stronger than I ever possibly imagined. Things that I thought at the time would break me haven’t. When I’m able to still reach my dreams and do more than I ever thought I could, while still taking care of myself and not burning out, I feel like a superhero. I would never be able to have this feeling without the formidable enemy of chronic illness to battle against. 

I am also learning how to prioritise. Chronic illness puts limits on me, but everyone has limits. I have used these limits to focus on what’s important, and let the rest go. 

I am learning what, and who, truly makes me happy, and chronic illness has taught me that I have an incredible support system of people I can depend on who want to help me and support me. As an exercise yesterday, I made a list of important things and people that make me really, truly happy. It’s a long list, and it keeps growing. While chronic illness makes it abundantly, obviously clear what I don’t have–a healthy body–when I keep wrestling it helps illuminate all the amazing blessings in my life I do have. 

I also think my chronic conditions have helped make me more empathetic and sensitive to the challenges and secret struggles of all people. 

When I was struggling with my health last year and how hard it is to balance illness and the career I love sometimes, I lamented to my husband about how I didn’t understand how I could live out my call to ministry when I was so sick and struggled so much. He, being the wise person he so frequently is, pointed out that the people in my churches will struggle, too. I can use my experience with chronic illness as a tool to reach out to everyone who is broken and hurting in their own way. We’re all human; we’re all fighting hard battles. Mine can help me better relate to others and have a heart for them. 

Seeing the positives in my chronic conditions is not a natural response for me. But my goal as I strive for wellness in 2017 is to do my best to continue to wrestle blessings out of them, no matter how difficult. 

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2 thoughts on “Wrestling Blessings out of my Ehlers-Danlos Syndrome 

  1. Just saw this via your Facebook post. Had no idea you were struggling with this. Praying for you and honored to have you as a part of our community!

    Like

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