My ‘Diagnosis Day’ That Didn’t Involve a Doctor

For  those who have ever been diagnosed with any serious chronic illness or disease, I’ve been wondering when we actually “get” our diagnosis.

I certainly recall the day I was given my diagnosis. My specialist phoned me with some results and gently informed me I had systemic scleroderma. To be frank, I was relieved. Finally, they knew what was wrong.

However, I will never forget the day I “got” my diagnosis —the day I understood it, and what it actually meant for my life.

To set the scene, my cat Otis leapt up onto the coffee table, the one I had my half completed jigsaw puzzle on. I had spent a long time working on it, all on my own, and I was pretty proud of my progress. Anyway, in the matter of about five seconds, the whole thing was scattered on my floor. It was like everything went in slow motion for those five seconds. Otis takes the leap, lands on the puzzle, puzzle skids and slides cleanly off the table and into fragmented pieces all over the carpet. Oh yes, and then our small dog gleefully gobbles up two pieces in his mouth and scuttles off down the hall to savor his tasty treat. Did I have the energy to start it all again? Not that day. It just seemed too overwhelming.

Now let me run a parallel story, very different in circumstances, not at all dissimilar in theme. Recently we traveled to another town in New Zealand. To make a long story short, I ended up with seriously painful knees, and couldn’t walk at all —all part of the joys of scleroderma. So the next day I ended up having to use a mobility scooter, for the first time ever.

I have to say, something happened to me in those seconds I had to sit on that scooter and steel myself to actually start it.

In those seconds I felt something break inside me. Time seemed to slow right down and I felt like I was watching myself in slow motion, clambering clumsily on and turning the key with shaking hands. And then with a full on turmoil of emotions, including shame, embarrassment, anger and the relief of not feeling the shattering pain, I got a clear view of the person I used to be disintegrating into pieces. Or at least, that’s how it felt for me. It probably didn’t look that way to others as I joked with the owner about whether I could possibly also rent a small dog for the front basket.

Perhaps it’s all part of the grieving process that someone with a chronic disease has to go through: the realization that the able-bodied healthy person they were is really and truly gone. Maybe I was hanging onto an illusion that I really was still the same person, and if I pushed myself hard enough then I’d be able to do it, slowly. But my body made it clear that I’m different now. And in the few seconds I made myself get on the scooter and drive it away, it felt like a repeat of the way I felt when Otis the cat broke the puzzle. All the pieces of who I used to be, everything about what I could physically do, and all the hard work I’ve put into working hard at achieving myself as a mother, wife and successful therapist seemed to disconnect and scatter.

And I actually felt like I was driving away from me.

Distressingly, when I returned the scooter later that day, the old me wasn’t there waiting. I still haven’t found her. I think she actually took off some time ago, but I was pretending she was still there. Damn, I hate it when that happens. Realizing your own self-delusion is a shrinking experience.

It’s been awhile since we got back. All isn’t lost. I’ve realized the pieces are still there, but they just aren’t fitting together any more. I’m unclear about who I am now.

Do I have the energy to start the puzzle again?

It’s all a bit overwhelming.

So, not today.

Follow this journey on Kim Tocker.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.