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When I Chose to Accept My Chronic Illness

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I’ve been looking for an explanation for my chronic pain for almost four years. I’ve seen specialists in Indiana, Texas, Illinois, Minnesota and in several cities within those states. Thousands of dollars have been spent trying to find someone or something to help me. I’ve spent countless hours missing out on my education, my job, my social life — it’s exhausting.

I recently made the trip to the Mayo Clinic in Rochester, New York, and was so full of hope on my way. I truly thought that this would be the place that finally made sense of the struggle daily life has proven to be for so long. They ran the tests, they did exams, they tried everything that is currently known in the medical field to find the answers I so desperately wanted. But it was a futile effort, and I still don’t know why I live in constant pain.

I thought I would be devastated after I left the clinic without the diagnosis I was hoping to get, but it was oddly eye-opening. On the drive back home, I started to realize this is my life, and it may very well be my struggle for the rest of my time on earth.

My conversations changed drastically when I began to accept the ways I’ve had to change my life to accommodate this new way of living. For the past 1,355 days, every time I talked to someone, it felt like the conversation landed on me — how I was feeling, any recent progressions, medication side effects and the emotional struggle and stress that comes along with trying to cope.

I started to notice I had been so preoccupied with my own life that I had no idea what the people around me were going through. They were hesitant to talk to me about things because my pain and frustration had made my life so difficult already, and it seemed to invalidate their challenges compared to mine. This isn’t the way I ever wanted my relationships to be.

I began to ask, “How are you?” much more often and started paraphrasing my health woes to shorter novels. This isn’t to say I don’t need to vent sometimes and won’t ever mention the way I’m feeling, but I want it to be more of a two-way street and for those around me to feel seen and heard as well.

It’s been a huge advancement for me personally and even makes the things I’m dealing with feel a bit smaller. Instead of always feeling my own pain, I can empathize with others about theirs and share in their happiness. I’ve allowed myself to really start living again even with the illness. I don’t have any more energy than I did a few weeks ago, I haven’t gained any of my health back and I didn’t get any answers, but I did get a change in perspective and it has made all the difference. Even if my living is done from the couch, I feel like a participant in my life again as opposed to a bystander, watching the days slip past me stuck in my rut of frustration and pain.

I’m not fighting anymore. I won’t stop trying to find my answers or the right combination of medication and lifestyle that will allow me to feel better physically, but I’m not rejecting the way I have to live now either. I’m not looking for a cure but rather ways to incorporate my current limitations into living a life I want. I’m allowing myself to feel OK that I never finished my degree. It’s OK that I can’t do all of the things I used to. It’s OK that I can only have one outing per day most days and need to rest afterward. It’s OK that an “outing” for me may be going to the grocery store. It’s OK that I need to take long breaks between small chores so that I can let my limbs recover. I’m OK.

I am a new me, and that’s OK.

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Originally published: October 26, 2016
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