Learning to Manage the Physical and Emotional Pain After My Diagnoses

As a child, my health was generally good. As an adult, things have been much less straightforward.

My health waxed and waned throughout my 20s. I moved to a city I adored, made friends, lost friends, explored art and music and had a career. It was a beautiful, exciting time in my life that also brought great pain. It reminds me of one of my favorite movies, “Eternal Sunshine of the Spotless Mind.” However tumultuous, I wouldn’t trade those memories for anything. Looking back, they are hazy like a dream and crystal clear at the same time. How, I don’t know.

Things calmed down considerably for me as I ventured into my 30s. I was enjoying my chosen profession and I spent most time with family and a few friends. I had some health issues, but nothing particularly alarming.

 

In 2015 I became very ill. I experienced severe weight loss, stabbing pains in my gut, fatigue beyond description, and gastrointestinal issues. I had also been plagued by intermittent tingling in my hands. I went to two doctors and they told me I was vitamin-deficient and suggested I take supplements and laxatives.

I knew deep down there was something more going on, so I went for a third opinion. In April 2016, I was finally diagnosed after years of struggling. I have celiac disease. It is not an allergy or a fad, and it sure as heck isn’t going away. It is a serious autoimmune disorder, the only treatment being lifelong adherence to a gluten-free diet. With this diagnosis came hope. It was tangible, understandable and I could say with confidence what was wrong and how to fix it. Oh, how little I knew about my own illness.

I sat back and waited for the symptoms to subside, to feel better. But instead, I felt worse. After several more tests it was confirmed my gallbladder was chock full of stones. It was explained to me that many people with Celiac Disease have this comorbid condition. I subsequently had a cholecystectomy.

After my surgery things just weren’t right. I didn’t heal in the estimated time frame, and had to extend my leave of absence from work. I continued to have pain but now instead of stabbing pain, I felt a dull ache that radiated from my phantom gallbladder to my pelvis to my back. “Man, this is some slow healing,” I thought. I returned to work functioning at approximately 70 percent. I took it slow. My coworkers were very understanding and accommodating. I am grateful for that. The pain never went away though, it just kept getting worse.

By early 2017 it was a struggle to get out of bed.  I could barely walk some days. Then “some days” turned into “most days” and “most days” turned into “every day.” Upon waking, the second my feet hit the floor in the morning, my whole body was ignited by the most excruciating pain. Pain that began at the base of my neck, traveled the length of my spine, through my joints to my feet. By now peripheral neuropathy had limited function in my hands to five-to-10 minute intervals. I had debilitating insomnia. I had to pee all the time. I have never experienced an overactive bladder before, and that is some uncomfortable stuff. I found myself missing more work than I was OK with. I have always prided myself on my work ethic and it sucks when your body takes you hostage.

After countless scans, tests and biopsies, my struggling was given a new name. Fibromyalgia. So, the good news is I have validation. My pain is real. The other good news is I am not dying. Bad news? Again, no cure. Am I gonna struggle more? Yeah.

I am currently in this awkward space of trying to figure it out. How do I manage this pain? How do I go to work in this pain? How do I emotionally accept my situation? How do I keep myself from becoming isolated? How do I maintain my sense of self? Sometimes I find myself getting very angry that my life has become so limited. It’s only natural to feel the feelings. And I make sure to feel them. Each and every one. The pain, sadness, confusion, fear, hopelessness. That doesn’t mean I am giving up. I’m just working through it.

Please do not misunderstand me: I am grateful for every day I am given. But even more than that, I am grateful for the lessons I have been taught. My experience has been tremendously humbling. We should never judge one another or make assumptions based on how things appear to us. You never know what someone is dealing with, the roads they have been forced to travel or how alone they may feel due to chronic illness.

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Thinkstock photo via Zoonar RF.