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Dis-Appointment

Feeling hopeful before my appointment began

You know that feeling of letdown when you’ve really built something up in your mind, and then it falls terribly short of your expectations? Like when you’ve got leftovers in the fridge that you just can’t wait to eat, but when you do, they just don’t taste as good as you remember? Or your favorite book was made into a movie, and it sucked? Or when you went on a date with a person you really thought you’d hit it off with, but the whole evening was a huge pile of awkward? When your favorite band just doesn’t sound as good live as they do on the CD? When you planned a beach vacation, but it rains the whole week? When you hike to a waterfall only to find out it’s more of a trickle?

 

That’s the kind of letdown feeling I’m talking about, except multiplied by 100, because this letdown affects my entire life instead of just one short, defined period of time.

 

I’m talking about the letdown of a disappointing doctor’s appointment.

 

And boy, was I let down hard last week.

 

Hearing the doctor tell me that he didn’t believe my condition to be autoimmune was a letdown. Not that I want to have an autoimmune disease. I don’t. But truthfully, at this point, it would have been a relief.

 

It is hard to live day-in and day-out with something that causes you so much pain—that no one else can see—and not know what it is. Fear of the unknown is powerful and can lead you down some scary “what-if” themed rabbit holes in your mind. It’s easy to get overwhelmed by the possibilities of what could be wrong with your body. That is why it would have been a relief to hear him say “Yep, it’s Lupus!” At least I would have an answer.

 

Isn’t that awful, that I sit here and lament the fact that I wasn’t diagnosed with a debilitating, lifelong autoimmune disease? This is what fear of the unknown does to you.

 

But this letdown goes even beyond the despair of still not knowing what is wrong with me.

 

On a more personal level, this rheumatologist seemed to have little regard for what I’m going through. He was inattentive, distracted, and hurried. I actually watched him leave the office for the day before I did.

 

And that was perhaps the biggest disappointment of all.

 

As an undiagnosed spoonie, I am forever waiting for my next appointment. These are days full of hope for answers and validation that this isn’t all just in my mind. These days are highly anticipated, prepared for, and prayed about. For him to treat me as an inconvenience standing between him and quittin’ time broke my heart. I have a decent amount of confidence that he knows what he’s doing and wouldn’t just make a guess at my condition in order to get me out the door, but because he didn’t take any time to discuss symptoms thoroughly or suggest next steps, I was left with doubts.

 

He was right though (despite his terrible delivery), and according to the blood work pulled that day, my condition is not autoimmune. I am relieved and frustrated and overwhelmed all at once.

 

With this dis-appointment behind me, I’m looking forward, fighting the what-ifs and the fear daily, and hoping that my next appointment produces the answers I so desperately long for.

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4 thoughts on “Dis-Appointment

  1. Oh my. Sorry to hear that, but one I have heard way too often.

    One day at a time, and just keep at it. For me every sunrise is wonderful, a nice espresso is a good way to start the day. Of course having a Golden Retriever next to me is just icing on the cake.

    Leishmaniasis came to mind, but in the America’s rare to find outside of Texas, Central and South America. It is like peeling an onion, keep ruling out everything else.

    1. How interesting that you mention Leishmaniasis. I spent 5 months in South America in college, and just about 6 months before I got sick, Hubs and I honeymooned in Costa Rica. I think this is worth mentioning to my doctor. Thank you for the tip!
      One day at a time really is the best way to tackle this life with chronic illness. It’s far too easy to get caught up in the future and the what-ifs. Let’s continue to enjoy each sunrise, espresso (or cashew milk latte, as I had this morning!), and pup snuggle!

  2. Have you considered applying to the Undiagnosed Diseases Network? They are a research group that aims to find diagnosis for patients with conditions that have eluded medical diagnosis. Best of luck.

    1. I have actually not heard of that! I’ll definitely look into it. Thank you for sharing!

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