The Ups and Downs of a New Diagnosis

Some people say getting a new diagnosis is heart breaking. Some say that a new diagnosis is a relief. Then there are some who don’t mind so much, and some who mind a lot. And for all of these, many of us are in the middle.

There are so many ups and downs on the roller coaster of emotions that come with a new diagnosis. There’s a pattern that I’ve noticed to each of my diagnoses, one that is followed step by step in nearly every new discovery.

The first down is when I realize I have new or worsening symptoms. It mentally exhausts me to recognize that something more is developing, and the more doctor’s appointments and tests are going to be upcoming.

The first up is when I’m sitting in a bright office with my doctor, telling them my symptoms, and they nod along having been through this with me before. They believe me, and they’re going to help me. I know they will.

Next, there’s another down. Whether I hear, “I don’t know what could be causing it,” or,“I bet I know what’s causing it,” it’s a down. My heart sinks no matter what,because I’m always hoping for them to say something along the lines of, “Increase your vitamin D and you’re good to
go,” or, “Get some more sleep at night and you’ll be feeling better.” But they never do. So again, we’re scheduling tests to try and pinpoint this new diagnosis, and hoping for the best.

The next part of the roller coaster is a corkscrew, where I’m spinning around but I’m not sure which way I’m facing, which way I’m going, or when it’s going to end. I don’t know if I’m happy or sad that my blood tests came back with question marks. I don’t know if I’m grateful or disappointed that my testing came back with “abnormalities” and yet no definite answer. I don’t know what I want to hear.

After the corkscrew, I’m on an even track, but I’m in dark tunnels with sharp turns and can’t see the light at the end of the tunnel yet. After weeks or months of testing, there is a name for what is causing my troubles. It’s not an up, and it’s not a down. I don’t know what it is. I don’t fully know what I feel. It’s a mixture of emotions: Relief in knowing what is causing my symptoms that persist on and on. Heartbreak in realizing I have yet another “problem” with my body. Happiness in understanding my doctors and I finally have something to treat. Resignation in recognizing many treatment plans are touch and go, trial and error, or non-existent.

From there, it’s smaller ups and downs:

Up, when I finally begin treatment and see results.

Down, when those results taper off and I’m left feeling lost again.

Up, when I overcome a limit that the symptoms have confined me to.

Down, when my symptoms hold me back.

Up, when I get a new, updated treatment plan that works even better.

Down, when I realize that even with treatment, I still deal with the illness.

And up, when I accept the diagnosis.

There will be ups and downs from then on, but the most important hill is that last one mentioned – when I accept it as a part of me, while still knowing who I am has not changed.

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