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Keeping Hope After Each Disappointing New Doctor and Test Result

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It’s hard to be sick all the time, to be in severe pain, all the time. To go from doctor to doctor. Hope to hope. Thinking this might be the one who figures it out. Who can actually help.

Then, the devastating crash, when that promising new doctor turns out to have no answers for you. Gives up on you after one or two appointments, despite promising you the world at the first appointment; or worse, isn’t helpful even at the first appointment. An appointment you’ve been waiting months or even years for.

It makes it harder to cope. Harder to keep trying. Wondering if it’s time to stop looking for answers and accept that your life will always be this hard to live. What’s worse is when it causes family or friends to doubt that you are sick. Some start to wonder. Wonder if it’s in your head. Or assume you want pity or attention.

I’ve always had pain. I don’t know what a pain-free life is like. I wasn’t diagnosed until I was 23, for a congenital illness called renal tubular acidosis (RTA) that I’ve had my whole life. Twenty-three years it took before I had any answers. But, I still have some ongoing medical issues that are not yet explained or diagnosed. Anaphylaxis, angioedema and chronic infections have become a regular part of my life and I have no answer for it. I have no answer, but they impact my life severely, on top of the pain I have from RTA and chronic kidney stones.

In many ways I feel like my body is a traitor. It causes me so much pain, illness and so many infections. Yet, when tests are done, my body often shows nothing conclusive in the test results. Or, shows an odd result but the explanation for it is a mystery. Sometimes, it’s even like taking a car to the mechanic. The visible symptoms magically improve by the time I see the doctor. Only to start again a week later.

I want more from life than this. So, I keep searching. Hoping. Trying. What gives me some hope is to remember how long it took to get my congenital illness diagnosed. It took a long time, but I finally had some answers. So, I keep hope. Even when it hurts so deeply each time my hope is crushed, with each new doctor, with each new disappointing test result. Even though I fall into a dark pit of despair for a few days. I claw my way out of that pit, because this is my life. I have to try. I deserve it. I’m worth it. So are you.

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Thinkstock photo by lzf

Originally published: April 29, 2017
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