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To Those Who Still Don't Have All the Answers to Their Health Issues

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There is no bigger relief out there than a person with a chronic illness receiving a diagnosis.

Some may think this sounds…odd. Why would receiving a diagnosis be considered a good thing? How is receiving a diagnosis at all relieving? Isn’t it terrible to know you have a lifelong, incurable disease?

Yes, and no at the same time.


Let me explain: years pass by of feeling sick with countless doctors appointments, blood work with negative results and no answers. It gets exhausting. Trying and tying. Seeing this doctor and that doctor. Taking different medications or supplements. Getting test after test done. And still, despite all of these efforts and time spent towards you trying to figure out this puzzle, you feel as though you are not any closer to answers as you were when you started your quest.

So when a doctor comes along that finds this missing puzzle piece, it is a huge relief. It almost feels like a giant weight has been lifted. Because, yes, you have a chronic illness that waxes and wanes over time, but, at least you know what is wrong. At least now you can treat the illness to help your symptoms. At least now you can have that peace of mind knowing you aren’t “crazy” or making the whole thing up! Which, by the way, is a huge fear of mine.

But it is never that simple. Once one doctor figures it out, another doctor thinks they have the answers and the other doctor is wrong. The doctors suspect you have this illness, but the results come back negative. Now you feel as though you are back to square one.

That is how I feel.

This time a year ago, I felt a huge relief. The unknown of the six weeks I was waiting for the results from my muscle biopsy were weighing on me every second of every day. Until that day when I heard the words…”We know why you’re feeling this way, and we can treat it so you start to feel better.” It was music to my ears! I finally had a concrete answer for all I was feeling and all I was going through.

But what happens when the treatment methods suggested don’t work? You get a second opinion. What happens when this second opinion questions the original doctor’s diagnosis? OK, you undergo their tests. What happens if results conflict, and now, you are no longer sure if the main diagnosis you have had for a year is even the right one? What happens when the doctors disagree? What now?

It is a horrible feeling to be in limbo. It is a horrible feeling to be in the dark, to be in the unknown. Especially after you think you have all of the answers! And if you are in this situation, I am very sorry. I know how awful it feels. But do take some comfort in the fact that you are not alone in this stage. In fact, I think it is very normal for chronic illness warriors to experience this during some point of their journey.

This is where we need to practice patience. We need to practice acceptance. We need to focus on being in the here and now, and know all answers come in good time, and at the right time. We are eager to have all of the answers. We are tired of fighting this fight and battling our health every day. But if we just keep holding on, our answers will come.

Don’t give up. Together, we can get through this. Together, we can beat this. Don’t underestimate the power of the chronic illness community; it has given me strength and hope when I needed it the most. And my hope for all of you reading this is that this community can provide you with that same promise and fortitude as it did me.

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Thinkstock photo via llhedgehogll.

Originally published: August 14, 2017
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