My Diagnosis

Until I was 13 years old, I only ever understood the meaning of acute pain. I thought that pain was my body’s way of saying, “Hey! Pay attention to me! Right here! Something is wrong!” When I started having pain, I assumed this was the case. I assumed I would go to the doctor, and find out what was wrong and exactly how to fix it. However, each specialist I encountered would rule out more possible causes for my pain.

Months passed, and my pain began to worsen. Yet after each appointment, I found myself even more confused about what was going on inside of my body. Each doctor would clear me for whatever cause or condition they were looking for, and then send me out the door. Most of the time, they didn’t even offer any guidance as to what to do next.

I felt like they did not see me as the person who would have to go home from the doctor’s office that day. Instead, they saw me as a body.

Visit after visit, I re-explained my pain, but I felt that no one was really concerned. I was poked and prodded at. I was sent for scans and blood tests. They kept telling me that nothing was visibly wrong with me, like it was good news. But all I wanted was for one of those tests to come back positive, so I could start getting better. For my whole life up until this point I believed that if I was sick or hurt, I would go to the doctor and they would know how to make me feel better, and soon enough I would get back to life as I knew it.

My family and I had spent over a year trying to figure out what was going on with me, when I finally came across the words “chronic pain”. After yet another examination with yet another doctor, she told me that I had something called primary chronic pain syndrome. I felt a brief wave of relief. Someone had FINALLY put a name to my suffering. But as I learned more about what these words meant, my sense of relief was replaced with rage, denial, and self-pity.

At that point, what I was learning about chronic pain was that it is very complicated. I may get better or I may be living with this for my whole life. I had not considered that this pain might not go away. This was something that I was not prepared to accept.

I could not understand how my body could be in so much pain, yet I somehow appeared so healthy.

I would eventually have to shift my whole mindset about pain, but for the months that followed I continued to be filled with disbelief. I continued to hold onto hope that the doctors had just missed something, and once they found it, this whole nightmare would be over.

If this really was chronic pain, how had I gotten here? I couldn’t stop feeling like this could have been avoidable. I was angry at the world, angry at my body, angry at the doctors, angry at myself. Why hadn’t anyone had any sense of urgency when my pain started? Shouldn’t someone have tried to prevent the development of chronic pain in the first place? If only they had figured things out sooner. If only I had explained my pain better. If only I had demanded to be listened to. If only.

I felt the happiness being sucked out of me. Each moment of pain brought on a spiral of worries and questions without answers. I was filled with the fear of waking up and facing another day of pain, and the fear of doing that everyday… forever.

I felt hopeless, and desperate for something, ANYTHING, that could help me.

It took me awhile to get unstuck from this place. Back then, I couldn’t even imagine what coping and pain management would look like in my life. Those concepts sounded so abstract and intimidating to me. I didn’t know where to start or who to turn to. Yet here I am five years later, and I’m getting the hang of it.  Read on for a closer look at what I mean!

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Last Updated: September 22, 2020