The Symptom That Set In After the Relief of Getting a Diagnosis Wore Off

Six years.

That is the amount of time it took to get a diagnosis. Between onset and time of diagnosis I was told there is nothing wrong. I was told I am a hypochondriac, that it’s all in my head. I went gluten-free and
dairy-free hoping for relief of symptoms which resulted in minimal relief. I was told I just have a sensitive stomach, as if that was supposed to make me feel better.

“You have anxiety,” they said, “There is nothing wrong” they said.

Well, let me tell you, saying it’s not real or that nothing is wrong only adds to the pain because it is real.

September 2016 I sat in the doctor’s office trying not to think about what my doctor will say because of the emotional battle I would be in if he said nothing was wrong and I was left once again with no answers. When he came in and told me the results revealed delayed gastric emptying of solids and liquids, that I have gastroparesis, I was relieved.

I thought, “Finally, some answers!”

I left the office in shock, replaying the conversation over and over in my head trying to remember if it actually happened or if it was just some cruel joke and it was actually just a dream. I finally settled on
reality and it eventually set in.

This current big flare is actually the longest one so far. They just keep getting worse and more intense. I’m now beginning to realize how scary this condition really is, how terrifying it is and know that I need to have courage and faith especially amid the struggle.

Once the relief wore off I started the grief process all over again. I won’t lie, I think I have been all over the place on this one. It seems to change from day to day but it’s still there just maybe not in the same stage.

Honestly, the grief process is one I am all too familiar with having lost loved ones, and living with chronic illness.

It started with denial.

Then it was me getting mad at myself. Blaming myself.

Punishing myself for something I have no control over.

Finally, it’s struggling to face reality because my reality has the flares growing in intensity to the point where I am now consistently dehydrated, unable to get enough nutrients, and feeling like my body just won’t absorb liquids or nutrients like it should. I’m to the point where I am frustrated and just want to give up. Except, I don’t truly want to give up. I don’t want to die.

I want to live so I fight. I’m researching feeding tubes. GJ or J-tube.

This is the symptom I fight now that relief has worn off.

I fight letting go of what was and embracing what is.

I fight it because it’s scary, because this condition is really scary sometimes and I have to force myself to think of other things.

I wrestle with the idea of how I am going to share this news with my friends and family but at the same time I know that I need to. I want to advocate for gastroparesis, because if I don’t speak up some of them may never know what it is and I’ll just struggle in silence. Maybe it will help them when/if they encounter someone else with it.

I wrestle with the idea of how I am going to share it with them, even as I’m seeing a surgeon to discuss feeding tubes. I know I can’t hide that.

Mostly, it’s the frustration of people trying to force feed me as if that will help me feel better. Or, the frustration of people telling me I need to eat or drink more, when they can’t understand my pain.

It’s the frustration of not being able to eat my favorite foods anymore, or some weeks nothing. It’s the frustration of knowing that people are uncomfortable being around me when there is food present because they know I can’t eat. It’s the frustration of people thinking I am suicidal when I am having a bad day.

It’s feeling so alone, and mad at myself, and not being able to talk about it with those who love me because I just can’t seem to say it out loud.

Some days I just think, “I can’t do this.”

When I talked with my doctor about feeding tubes, which was after my dietitian brought it up, I felt that I needed to have courage and faith. I’m beginning to realize that is true.

Courage and faith to embrace the storms that the grieving process brings because it’s never-ending. Courage and faith to try treatment options even when they seem terrifying to me. Courage and faith to stare down the face of this monster, gastroparesis, and the ugly side effects of the treatment options.

I may have been ready for an answer, but of one thing I am certain: I wasn’t quite ready for this shock, the strong waves of different stages of the grieving process.

Grief is the symptom that snuck in as relief left.

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