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The Terrifying Realization You May Be Powerless Over Your Disease

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My phone rings… it’s my doctor’s office. I was told it could take up to a week for results from the biopsies to come in. That was less than 24 hours ago.

The phone conversation with my doctor is a sobering one. The treatment I am currently on isn’t working and now we have to decide the next course of action. She doesn’t know what is the right answer… and she sounds exhausted.

I’m lucky. My gastroenterologist understands that I know my disease better than she does. She understands that it is fickle and that I have done my research. She treats me as her partner in this battle for remission. She always has…

But today I talk quickly to cover my shaking voice as we discuss the different options. My hands quickly write down the names of the drugs she recommends to cover up my nerves.

I tell her to give me a few days to look into these drugs and treatments and I will get back to her on Monday and we hang up.

I go for a drive to clear my mind, going over what I know in my mind.

And what do I know? I know I have tried more medications and treatments than I can count. I have tried acupuncture, diet and other eastern medicines. I have tried stress management and meditation. And I know that all but one didn’t work.

And the one that did only worked for a year.

I feel a knot in my throat thinking about surgery. Surgery is final and while many experience remission… there is always a chance the disease will become active again.

I get angry, thinking about all of this.

But the anger is just a cover.

I don’t want to admit to myself the truth: I’m scared.

Not scared because of a bunch of “what ifs” going through my mind. Not scared because of what my employer might do or what people will say. Not even scared of what I may have to do…

I’m scared that whatever I decide to do won’t work.

I’m scared that I am actually powerless against this disease.

I want to cry, scream… something to release this fear in my chest, but I can’t.

I feel almost suffocated with fear.

But I cannot give up.

Oh believe me, I want to. I want to stop going to doctor appointments, lab draws, procedures… stop taking medications and supplements and just quit. Just be done with it all because I am so tired of fighting.

But I cannot quit. I have to move forward. For those I love and for those who love me.

So regardless of what the future has planned for me I will not give up. I will not lose hope for a better future. I will take action despite this fear.

And someday I will achieve remission. Even if it means fighting the rest of my life to achieve that goal.

Getty Image by Malombra76

Originally published: June 20, 2018
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