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The Stages of Grief I've Gone Through Since My Ehlers-Danlos Diagnosis


We’ve all heard of the five stages of grief: denial and isolation, anger, bargaining, depression and finally acceptance. We go through them when we lose someone. They don’t always come in order and people move through them at their own pace.

When you are diagnosed with a chronic illness you go through a similar process. And as you progress through an illness, especially one that gets worse over time, you go through this process again and again and again with each new milestone. I went through it when I got my diagnosis and then again when I had to have a railing installed in my bathroom and I might go through it again when I need to use a wheelchair full-time.

Often I see in my Ehlers-Danlos syndrome (EDS) support groups that people have the same reaction to a diagnosis or a milestone as they would losing a loved one and many – myself included – don’t know if this emotional process is valid and if it compares to the grieving process. It is, it does and here is why.

We grieve. We mourn the loss of the life we had, we mourn the life we won’t live.

My diagnosis came about oddly: a nurse treating another family member heard me talking about my health and suggested EDS. I went to my doctor and he researched EDS then sent me to a geneticist for clinical diagnosis. My road to diagnosis took 19 years from the time of my first “injury” to the day someone said, “Yes, this is it.”

It’s been almost two years but I can still remember leaving the doctor’s office after I got my official diagnosis of hypermobile EDS. I left overwhelmed. I had paperwork, questions, referrals and overwhelming emotions. For me it was simple: the doctor looked at me and confirmed what I pretty much already knew about my health. But I can remember the parking lot, the weather, the time of day, what I was wearing, where my car had been parked, all of it. I drove home and wondered if the doctor was right. Maybe he was wrong. Maybe I didn’t have this weird thing no one had ever heard of. No one in my family had it that I knew of, so maybe he was wrong. There isn’t a genetic test for hEDS so maybe he’s wrong. I told myself he was just one doctor. He didn’t know it all. Maybe he was wrong. Denial.

I drove home and sat down to digest all the info. I told a few people but not many. Not at first. I started reading tons of info. I cancelled lunch plans for the week with some friends. I took time to learn all about EDS but I stayed home and alone to do so. For me this didn’t last since I’m way too social, but it happened for a day or two. I may have been out and about in the world but I felt incredibly alone. Isolation.

This next one for me is ongoing: Whenever I’m hurt from a subluxation or dislocation. Whenever I miss out on something. Whenever I feel like I can’t do what I should be doing or want to be doing. When I have to schedule my life around physical therapy times. Or take a nap or skip a shower so I have energy to make dinner or go out for the evening. When I have to ride in a wheelchair for the day instead of walking with my family. Whenever I see people on social media doing what I want to be doing. When I have to plan my life around my illness. It’s not fair. Why me? I still can’t talk about the doctor I saw for 10 years of my life who dismissed me and called me a hypochondriac and suggested I was just depressed. I have dreams about telling him off. I still deal with this. This one is an ongoing battle and I’m never going to be over it. It’s unfair and it makes me so mad. Yep – this one is never far away. Most days when I feel it taking over I retreat so I don’t take it out on others – which of course makes it worse as it builds up, but I get over it. I remember the friendships I’ve made from this. The experiences I’ve had. The knowledge I’ve shared that helps others understand. It never goes away but I’ve learned to keep it at bay. Anger.

I got a second opinion. I saw a leading EDS specialist near me. He talked to me and did an exam. We sat at his desk, him with his papers and me on the chair looking at him. I remember what he said: “Yep, you have all the classic criteria for hEDS, no doubt about it.” I burst into tears. I cried. He was confused. After all, I already had my diagnosis. He wasn’t telling me anything new. I couldn’t explain my tears. I brushed them off. A while later, after leaving his office with a whole new set of paperwork and prescriptions and information, I realized I was hoping he’d tell me it wasn’t true. I was hoping he’d kick me out of his office and tell me he couldn’t help me. I remember wishing I had been diagnosed sooner. I hoped for a time machine to go back and change things. Maybe if I hadn’t been a dancer… Maybe if I hadn’t been so proud of my flexibility… I wondered if I had done something horrible in this life to deserve this. I wondered if I should maybe try to find religion. I wondered what I could do to make it all go away. Bargaining.

This is another one I still fight. I go through days when I think my family’s life would be easier without me. I wonder what I contribute to the world. I think about all I’ve missed out on. It never fully goes away and it never will. It creeps in when I’m vulnerable from an injury and I have to fight it off by reminding myself that I’m worth it, that I contribute in my own way. Depression.

I’ve grown fond of zebra stripes – something I honestly never really cared about one way or the other until after I became a zebra. I have learned to ask for and use a cane or a wheelchair when I need it. I embrace my disabled parking placard and take comfort in my heat packs and tens unit. I don’t apologize when I have to miss out. I don’t put pressure on myself to go above and beyond. I am an open book about my EDS. I post on social media when I’m having good days and more importantly when I’m having bad days. I made an EDS awareness wreath for May (EDS Awareness Month). I made fun covers for my crutches. My dog is training as a service animal to assist me. I have stepped back from commitments to better take care of myself. Most importantly, I’ve fully embraced what this diagnosis means and when I feel bad or sad or feel the need to help others, I write articles like this one. Acceptance.

I’ll never fully be over this and I don’t know that I’ll ever fully get through and be done with the stages of grief. I still mourn for the life I can’t ever have, the one with me hiking in the foothills near my house. The one with me going out at night and not being so tired. The one with me living a “normal” life like everyone else. But I’m here and I’m fighting and I’m trying to make the best of it.

So fight, my fellow zebras, and if you are newly diagnosed or maybe accepting a new challenge or roadblock, just know you aren’t alone. Everything you feel is normal; it’s OK and it’s good. You are allowed to feel however you feel, even if it’s not new – just an old feeling creeping back in.

So grieve – let yourself mourn for the life you don’t have. And then with time, move past it and grow from it. You are still here fighting and I’m fighting with you.

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Thinkstock photo via ChamilleWhite.


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