It's Okay to Not Be Okay
It’s okay to not be okay.
The short sentence I kept repeating to myself.
In truth, I was not okay. I was struggling and I did not know what was wrong. Pain had become my constant companion and I was trying to cope by overcommitting myself to a new job.
Burnt out, hurting, exhausted, and most of all very confused, I continued to tell myself it’s okay to not be okay.
My break down
My breakdown happened at Christmas dinner. My girlfriend had noticed changes in my behavior and suggested I seek some help. At the time I had many excuses for why my behavior had changed and I thought I just had to persevere until it all went away. I vehemently denied it. Until I was stirring the gravy for Christmas dinner and something about the repetitive swirl of the brown liquid trigged a realization in me.
I had been convincing myself that I was okay, to not show weakness, to tough it out.
Finally, I realized I was not okay
Certain characteristics of my personality have shifted. I was not as jovial and energetic as mere months prior. My routine had inexplicably shifted to no longer include things I loved to do. I was no longer saying heartfelt good mornings, hello's or goodnight's to my love.
I was swearing at food.
Seriously, this is our favorite story to laugh about now. At the time, it was one of the behavioral oddities that help me realize I was not okay.
My girlfriend was out of town and I was grocery shopping. I was walking past the canned food and noticed the tuna. You know, flaked light tuna in water for a buck a can or whatever it is. Budget diet luxury.
"She never lets me eat @#$*ing tuna. I’m getting some @#$*ing tuna."
It's ok to not be okay
It’s okay to not be okay, but you probably shouldn’t be swearing at food. Funny thing is, I didn’t even eat it. It just sat in the cupboard.
Unbeknownst to me, I was two weeks away from a diagnosis or nr-AxSpA at the time. I had been struggling with physical pain, but mostly I tried to ignore it. Eventually, it began to affect my mental health.
Depression symptoms occur twice as often for people with arthritis and one in five people in the US living with arthritis experience symptoms of anxiety or depression.1
I got help
Begrudgingly, I sought professional help. The first activity was a self-assessment test. I learned I have a tendency to internalize and isolate when faced with significant problems. The classic I’m fine, push down my feelings, and go forth.
The biggest realization was how much the pain frustrated me.
The mystery cause of the pain, the incessant nagging of the pain, the unknown of what to do about it.
But I'm still frustrated
I’m continually frustrated today. I hope I learn to live with this condition, but unquestionably my most impactful progression has been to better understand myself. To understand how pain affects me physically and emotionally.
The biggest change I made for myself was accepting this as part of my life. Not every day is a good day, but I am learning to recognize the bad ones and deal with them right away.
The pain will never just go away, it’s not a simple phase that will pass.
It’s okay that I’m not okay.
Does reading AxSpA patient stories help you in your journey?