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How My Husband Keeps Me Fighting Through Ehlers-Danlos Syndrome

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I met my husband in a nightclub when I was 20. We both loved to go to clubs and dance all night. I fell in love with him on a dance floor. I remember looking into his dazzling green eyes and just knowing. We moved too well together. We felt something in the music on the dance floor. We danced at clubs for years. We danced at our wedding. We danced at all of our friends’ weddings. We danced with our kids in the kitchen of our home. I’ve never had to beg him to dance with me. He enjoyed it as much as I did. We were that couple. We promised to dance together always and forever.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Yesterday my husband installed an angled grab bar in our powder room of the master bathroom. I’m 37 years old.

You see, when we met we knew I was flexible. It helped make me a better dancer. I loved to dance. I could move my body to the music in ways my friends couldn’t. I just felt music. I also thought I was clumsy. I was always pulling things, moving joints weirdly. But we found out 13 years into our marriage that my flexibility was a bigger issue. I have Ehlers-Danlos syndrome, type 3. I’m hypermobile.

At first it wasn’t a big deal. Right before we moved in together I twisted my knee. No one believed me when I said it just twisted and popped. We were out for my husband’s birthday with friends and I twisted it getting out of a car-racing video game. It didn’t make sense. I was walking around in pain and no one could believe I had done so much damage so easily. My doctor put me on crutches and thought I was covering up a car accident. I remember going to the orthopedist and being told that my injury was that of a professional NFL player – my kneecap had moved and twisted and I had torn my meniscus in a way that only made sense if I had been playing a sport or I had been in a horrible car accident. I was useless during our move-in day. I directed people from a chair while on crutches. He stayed. He set up our entire new apartment. He even asked me to marry him shortly there after. I ultimately had three surgeries on that knee.

Before we were married I was having all over pain and overall health issues. No one could find the source. My doctor at the time thought I was in an abusive relationship. He wanted me to go to therapy. He put me on anti-depressants. He didn’t believe me when I said I just hurt. My then-fiance stayed. He stuck with me. He did the cooking and the laundry, the cleaning and took a job he hated to better support us living together.

I went off the meds and planned our wedding. It was one of the most magical days of our lives. We danced a lot that day. We danced so much I could barely walk. I still remember one of my favorite moments was him helping me take the pins out of my hair and rubbing my feet. What should have been our honeymoon was spent with me in pain. But he stayed. He ran me baths and cooked and took care of me.

Three years later I had pain in my abdomen. No one could figure it out. My doctor was sure it was my appendix and sent me to the ER. The ER doctor said it wasn’t my appendix but admitted me so they could find the cause of the pain. The doctors in the hospital fought, in my room, in front of me, about what the cause was. The abdominal specialist was sure it was gynological in nature. The gynocologist was sure it was in my intestinal tract. I was sent home a day later and sent to specialists. The doctors did laproscopic abdominal surgery and took my appendix out, inspected my reproductive organs and ultimately found a blockage in my instestinal tract. He said this kind of thing usually happens in old ladies who drink too much orange juice. I hate orange juice. This wouldn’t be the last time a doctor compared me to an old lady. But my husband stayed. He admistered my meds, he helped me shower, he drove me to follow up appointments.

Two kids, a move across the country and I was still having issues. Always had a virus or a cold. Always rundown tired. Always struggling with some kind of injury. My shoulder gave out. Then my wrist. Then my hip. I was finally given a diagnosis of Ehlers-Danlos syndrome and things added up.

Since then we’ve made some lifestyle changes. He’s pushed me in wheelchairs when I’ve been injured or on family trips when he knows I want to be there but I can’t walk that much all day. He’s fetched pain meds and fuzzy socks when I just can’t get comfortable. He’s slept in the other room on nights when I finally have all the pillows comfortable around me and my subluxed hip and he knows moving to accommodate him in bed would hurt. He’s worked from home when I’m having a flare and he’s dealt with the kids when I’m just done for the day. He’s let me adopt a dog that he has to clean up after because she assists me with things and will be my service dog.

Yesterday he installed a grab bar in our master bathroom so I could get off the toilet by myself. Most days I can do it but some days, and especially some nights, my hips, back or knees just won’t allow me to move by myself. My body is fighting against me now. One day last week I was home alone and stuck. I couldn’t get myself off the toilet so I knew it was time we did this. And yet, it feels too soon. I want to be the young mom who runs around with her kids and dances with them in the living room. I never could have imagined when I met him on the dance floor so many years ago that at the young age of 37 he’d be installing a grab bar on a Saturday afternoon so I can lift myself up.

But here is my truth: We may not dance the way we used to, we may not move to the music as freely as we once did, but I still see that sparkle in his eyes. I still feel his heart when we move to music. It may be as simple as a sway in the kitchen or a hand hold during a song, but he’s there. The music is in us and it always will be. He stayed. And for that I’m the luckiest woman alive. For him I’ll keep fighting. Always and forever.

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Lead photo by Thinkstock Images

Originally published: January 31, 2017
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