Reflecting on 13 Years of Chronic Pain

By Crystal Lindell

I first developed chronic pain in February 2013. I remember the month because it was Super Bowl weekend and I went to a party to watch the game.

That was the year they had a long blackout delay, so the game ended up running super late. I stayed until the end.

I woke up the next morning with some soreness in my right ribs, and I assumed that I must have just lifted something wrong at some point. It got so bad I went to the ER.

While I had no idea at the time, my life was changed forever that weekend.

I was 29.

Within six months I was celebrating my 30th birthday at my new place: my mom’s house.

I had moved back home, an hour and a half away from my old apartment. I quit my second job, and shifted my full-time job to mostly work-from-home.

I spent the next few years desperately seeking answers, while trying to figure out a medication regimen that actually worked for me.

I also got extremely depressed.

I watched the entire TV series House, hoping to find an episode about a patient with the same symptoms as mine. I never did.

I mostly lingered without a diagnosis.

Eventually, the doctors decided to call it “intercostal neuralgia.” But that basically just meant “rib pain.” And how it had happened or why, they had no clue. They also had no idea how to treat it beyond managing the pain.

My long-term boyfriend – the one I had been with long before I got sick -- cheated on me. We broke up.

I cried a lot. I cried because my heart was broken, but also because my body was broken. I cried because of the physical pain, and I cried because of the emotional pain.

Then, finally, on March 15, 2018, I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). I remember the date because it was the Ides of March. And the day felt just as ominous to me as I imagine it was for Julius Caesar.

A moment I had long hoped for, one where I finally got some answers, instead turned to extreme grief.  

But that night, I went to a local political event in town and ran into this guy I knew named Chris. A week later we went on a date to see the movie Black Panther, and we have been together ever since.

In fact, we are celebrating our eight-year anniversary this Sunday.

At the time of my hEDS diagnosis, I was so worried that I would never find a man who could love my broken body. But within just a few hours, I was proven wrong.

Lessons Learned

Over the last 13 years of life with chronic pain, I have learned that I was wrong about a lot of things. As it turns out, pain is an extremely strict, rigid teacher. 

I used to believe the government messaging that “all opioids are always bad for you.” But these days I now advocate for patient access to opioid pain medication.

I used to think that if you told a doctor your exact symptoms, that they would be able to find out what was wrong with you and be able to fix it. 

Now I know that if you want to get treated, you have to be your own biggest advocate.

I also honestly believed that I had good health insurance. I truly did think it would cover most of my medical expenses if I ever got sick. 

But after drowning in medical bills for more than a decade, I have come to realize that the only people who like their health insurance are the ones who never need to use it.

I also thought my ex-boyfriend and I could get through anything together. Clearly, that was not the case.

I assumed that my friends would be sympathetic with what I was going through. But in the end, chronic pain left me with a much smaller circle of loved ones. 

I also like to think that chronic pain has made me a more empathetic person. When I meet other people in pain, I do my best to show them empathy and to give them realistic advice that could actually help them.

Today, over a decade since I first woke up with chronic pain, it’s difficult to envision what my life would have been like if I had never gotten sick. 

So many of my life choices have revolved around my pain – from who I live with, to who I love, and to what I do for work.

To be completely honest, I like my life right now. Yes, I wish that I didn’t have to arrange my entire day around my physical pain. But I love what I do, I love the people I spend my days with, and I am content.  

I think that, in a lot of ways, chronic pain forced a contented life onto me. It forced me to evaluate everything I did, to see if it was actually necessary and if it was actually worthy of my time and energy. What was left was only the best parts. 

It is noteworthy that my pain is pretty well managed these days, at least compared to how bad it was in 2013. I still have bad flares, but for the most part, my medications help me get through the day. 

Looking back, there are so many dark nights in my past where I felt like the best choice was to just give up. So many painful hours in bed where I genuinely considered killing myself. 

But now, after 13 years of this life with chronic pain, I am so relieved that I decided to keep living it.