Published: 20/06/2018


By Amy A.C.

Is it okay if I begin with a confession about myself? You see, I am a perfectionist who can’t stand any disruption in her routines. I am a rigid rule follower, unforgivingly strict about the outline of my day, and a very self-driven entrepreneur. Look, I’ll be honest; everything is great as long as everything goes exactly as I have planned it. This is why, perhaps, that my recent diagnosis of EDS completely turned my world upside down.

Two years ago, I began having issues gripping a pencil, typing at my computer, or holding a book because shooting pains traveled through my fingers, hands, wrists, and elbows. Diagnosed with radial tunnel, I was sent on my way with a list of exercises to resolve the problems. The pain continued to persist though, almost in a domino effect, as it spread throughout my other joints. As a physically fit woman, the rapid decline was both baffling and depressing.

I happened to be participating in a church Bible study, during this difficult season, and I found myself at the communal table, nursing another newly braced joint. It is at this table that our study leader (who also has EDS) asked the magical questions needed to unlock, not only my diagnosis, but the diagnosis of both my children. Our visit to the doctor confirmed her suspicions and I was handed a large packet of info, a supplement schedule, and a booked appointment to meet a specialist in six months. I will never forget that feeling of mixed relief in the knowing and the anguish in the dissolution of the tidy ending that I desired.

The reason I lead this story with being a perfectionist and a planner is because this disease began to strip away my ability to plan my day. One day I would wake up and my ankles would be in so much pain that I could not go to the gym. The next day, my knee pain would make it impossible to get up and down my stairs, canceling zipping around the grocery store for our food. Another day would go down the tubes because the pain interrupted my sleep so much that I couldn’t even lift my head to see my kids off to school. Each day initiated a day of canceled plans due to an unforeseen ailment. I felt unreliable, angry, and robbed of my precious routines. How could I possibly guide my children through this when my own life felt so unsteady?

I knew that my emotional state was unwell so I began to meet with a counselor to talk through this challenging life hurdle. I actually had no idea how pent-up my emotions were until I started hiccup-sobbing in his office before I even sat down.

I explained that I felt as though this disruption in my routines was just as painful as the chronic pain in my body. Even the simplest of things, like my inability to go to the gym that morning, sent me on a downward spiral. I looked at him, as a mixture of snot and tears ran down my face and said, “I can’t live like this. I mean, I can’t even go to the (hiccup) gym because of my elbows.”

He looked at me, with great kindness, and said something that I will never forget. He said, “Why can’t you go to the gym? Did you talk to your instructors and see if you could modify? You see things as black-and-white, but they don’t have to be that way.”

I thought about this statement for weeks because he had hit the nail on the head. I have never sat in the middle, so to speak, of anything. This thought process had to change though because I, physically, would not be able to keep this pace anymore. It was through this counseling session that I began giving myself some grace and adjusted my decision-making skills.

In many positive ways EDS has refined my decision process, allowed me to say no more, and has given me a new filter on what and who I want to spend my precious energy on. The things I do still have time for are now evaluated for that middle ground. It could be as simple as substituting chicken nuggets for one night of meals or as grand as allowing someone to help me with cleaning my house. All of these middle ground moments aid in better pain management so I can be present for my family.

Living in the gray takes a great deal of effort and the lack of rhythm to my world did feel unnatural for so long. I still sometimes have to remind myself that the world will be okay if I don’t make black-and-white choices. In the end though, this new thought process has been a beautiful gift.


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this ‘#MyEDS/#MyHSD’ anthology is published “as-is,” with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors—and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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