Stages of Grief – Part 1

Everyone talks about the stages of grief in different ways, but they all start out the same, that I’ve seen – denial, followed by anger/depression, before acceptance. 

I lived the first three decades of my life in denial. Sure, things weren’t always as bad as they are now, but I was in denial that things added up. It was just a series of mistakes, right, as a child? Ankle sprains every time I wanted to push myself into doing things. Back, arm and hand pain from piano lessons, my escape from the real world. Chronic migraines. Never being able enough to commit to anything long term.

Heading into college, being unable to work without putting my legs up. It taking me 15 years to figure out that POTS, or whatever other dysautonomic issues I have faced over the years, literally meant not getting enough blood flow to my brain when my legs weren’t propped up. Fracturing a metatarsal in my left foot in a normal way that normal people break a bone… and then rebreaking it on average every 2 years for the last 15 years – the same one. 

Chronic pain led me from doctor to doctor as I hit puberty and was old enough to demand answers. “It must be Lupus.” “Oh, it’s not Lupus” – the refrain I heard the first time as a sophomore in high school and *still* hear from doctors when they forget that I have enough labels to answer the questions now. Fibromyalgia, they labeled me as a high school senior. Fibromyalgia, the doctors agreed, at University Hospitals in Cleveland. Then, the doctors could only see me at the same time as a required college class and so I switched to the next nearest rheumatology – Cleveland Clinic. And in 2006, the doctor asked me questions for the first time. Deep questions, about everything I’d ever experienced in life. 11 pages of notes, and asked: “Have you ever heard of Ehlers-Danlos Syndrome? Because I’m sure this is what you have.” 

No, no, I hadn’t. But with a strong scientific and medical education background, I read every single thing that I could about EDS. I was at Case Western Reserve University, and I had access to all the medical journals. I pored over every detail, managed to feel, for the first time, lucky. I had a label – and I did not have the worst case. So many people had it worse. Maybe I could pop all of my joints when they were slightly out of alignment (including the weird ones, like my SI joints and all of my vertebrae), but at least I didn’t have frequent full dislocations. Maybe I had pain, but I wasn’t dependent on others. It would all be all right.

So, armed with a label, I slipped fully and completely into the land of denial. Now that I knew what was “wrong” with me, I would definitely be able to man up and overcome it. Joint pain couldn’t kill me, and I didn’t have the “bad” cardiac symptoms, right? It’s all good.

Chronic injuries definitely were part of my life. I was married to my husband in 2009, and in 2010 as we searched for our first home we happily settled on a one level rancher… because of how frequently I was injured. But this was something I could overcome if I was just careful, right? Denial, denial, denial. 

I went through a high risk pregnancy in 2012, which came with its own issues, but they could all be chalked up to the pregnancy itself (and may have been). Post pregnancy though, I was determined to get back into the physical world. Determined that I would train for a half Ironman. Nevermind that I had never done a triathlon, or even run a full mile without stopping, I was determined that I could train for a half Ironman triathlon. I held onto this dream for six years. Every time I made significant progress, it came with significant setbacks, and I started back farther every single time. Instead of going forward with small setbacks, every setback started me farther back than I started.

It wasn’t getting through my head, that the more that I pushed my body, the harder I fell. Pushing a deep clean of the house one day, I might be down for the count for a week. Trying to train myself to run led to injury after injury, every setback worse than the one before it. Finally after having to get x-rayed again, and acknowledging the pain my body was in all the time, I revisited my EDS diagnosis. Surprisingly to me, there was suddenly a much higher wealth of information in the years that I had acknowledged but ignored it. Finally, I had to acknowledge that I just can’t do extreme athleticism. The article that pushed me over the edge, was this medium article https://medium.com/@chelseyengel/breaking-down-the-barriers-to-exercising-with-eds-and-hypermobility-692081adc462. Clearly, I had studied and knew a lot of this – but it was a whole different story to actually accepting that I couldn’t do everything. 

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