- The ability to fall asleep and wake up feeling rested. That’s one of the first things to go and the hardest to deal with. I used to love naps but I was always in too much pain to actually fall asleep.
- Being able to get ready. Doing my hair caused pain. Washing my face and putting on makeup caused pain. Trying on clothes hurt so much and zippers on dresses became impossible.
- Sitting on a backless chair. I got to the point where I couldn’t hold my upper body up because it was in so much pain.
- Being able to sit for any period of time without needing to fidget and move. 30 min meetings, doctor appointments, sitting at restaurants, sitting in church – all of these became endurance tests to see how long I could go before letting the pain show.
- Cramming too many people into a car. I used to do this without thought and would always end up on someone’s lap. Once the pain came, situations like this became unbearable and I would suffer in silence until we arrived at our destination.
- Cuddling on a couch. Being on a couch means constant moving to find a comfortable position and multiple ice packs. It’s hard to fit another human into that. Especially if that someone didn’t really understand how much pain I was in.
- Working out. I got to the point where I wasn’t able to work out – it hurt way too much to move and I never had enough energy to even get there.
- The ability to have enough energy to cook a meal after working all day. On the bad days, it was a success if I was able to microwave a meal.
- Travel. For several years if I had to get on a plane, I would take every medication available to me because I knew how much it would hurt and how much the flight would cause me to flare up. I started avoiding travel as much as possible. I also stopped doing long car rides because being in a car for any length of time was excruciating. An hour was the most I could do and I would have to rest and recover for hours after the trip.
My mom picked my name, Casey, because it meant “brave” and she wanted a daughter that was strong and fearless. She got a daughter who has skydived, bungee jumped, traveled the world, and cage-dived with Great White sharks –But has struggled to find her voice to share how chronic pain has affected her.
I have felt a desire or a calling for some time to share my story of battling chronic pain but I’ve been anxious to start because I had such a difficult time even getting my family to somewhat understand what I was going through. I am attempting to write my story now in the hopes that someone going through something similar finds comfort and hope in knowing that they are not alone – and that it will get better. I hope that no one else has to feel as isolated I did.
How it Started.
I was diagnosed with HLA-B27 positive ankylosing spondylitis arthritis in high school when injuries obtained playing sports didn’t heal and I was injured more going through physical therapy. I had a base level of pain from arthritis – and I knew it was a scary diagnosis for my age (ie: eventual spinal fusing) – but I was able to maintain a normal life.
That began to change during my junior year of college when my rib started giving me intense pain. Every single breath sent the sharpest pain through my body. Sitting became hard, laying down hurt my rib even more. I had no respite. I was always tired because it impaired my ability to sleep. The only time I wasn’t suffering was when I was able to go out with friends and drink enough that I couldn’t feel the pain anymore.
Senior year, the chronic pain from my rib moved to both sides of my rib cage. I also started experiencing a lot of pain in my neck. My ability to get a good night’s sleep and feel refreshed in the morning diminished even more. I struggled to have the energy to go to all the activities my friends were doing. I started staying in my room more, just trying to find some relief from the constant pain. The one thing that helped me get through senior year was talking to my Grandma almost every single day. She had experienced a bad fall and was also battling chronic pain as she tried to recover. She made me feel understood and not alone and the only comfort I had that year was that we were fighting the pain together. She would speak to the many ways that constant pain affects your personality and your outlook. I will never forget her saying, “when you’re in pain all the time, sometimes you just can’t be nice.” It hit so close to home because I was already seeing the way it was affecting how I interacted with others. Constant pain takes so much out of you that you can’t be your best self, it drains everything out of you and leaves you unable to be your finest in front of others.
I graduated in spring of 2015, moved to Atlanta, and started a job. My rib pain actually started getting better, but my neck got worse and I started getting severe pain directly on my spine. Along with this I started getting horrible pain around my shoulders, upper back, and neck from constant muscle spasms.
While I was seemingly doing well at work, going on dates, and having some sort of social life – Here’s what people didn’t see.
The pain. The endless amount of tests, injections, and issues with medicine. The isolation. The hopelessness.