Coping with Mental Health and Axial Spondyloarthritis: My Story
Everybody has experienced the toll a chronic illness can have on your mental health in one way or another. Being in constant pain, not being able to do the things you used to, the constant fight with your own body. When I look at my own journey there was a point where I didn’t see myself as normal anymore. I started hating my body and I talked down to myself. I saw myself as worthless. What could I ever achieve in this life? I pushed love away because who could ever love a sick person like me? All these conscious thoughts became my unconscious programming. For years these thoughts were on autoplay in my mind.
My all time low
In 2012 I had an abscess under my right buttock. That summer, I spent some time in the hospital where the doctors drained the abscess multiple times. There still was hope that my prosthetic wasn't infected. After some tests, however, the worst-case scenario came true for me. The infection had reached my prosthetic and it needed to be removed. I had to live without a right hip joint for three months.
My body had to be completely infection-free before a new prosthetic could be placed. I spent two and a half weeks in solitude after the removal operation because it was unclear what kind of infection I had. The physical pain that I had to endure at that time is indescribable. The mental fight broke me multiple times that year, with one of the fights being an architectural fail at the hospital.
The view from my bed
The bed was placed in such a way that I had a clear view of the cancer wing. If my bed was turned the other way around, I’d have a nice view of the park. Fortunately, my dad got me a mirror so that I could see more than just the cancer wing. When you are sick, and all that you see is sick, it’s nearly impossible to set your mind to healing.
During that period I started to play with the thought that if this would be my life, then I didn’t want to live it anymore. I even took some actions to make an end to this horrible life. I’m so glad that I never went through with that idea. I still had my family and friends to live for. The help that I received from the hospital was not enough in my opinion, though.
Only a few conversations with a psychiatrist who prescribed me antidepressants, which to me is nothing more than a chemically induced smile. On the inside, nothing had changed. After placing the new prosthetic and the rehabilitation period I was sent back to work as soon as possible. Still carrying the trauma along with me.
I did what was expected of me, I went back to work with a smile on my face, never truly realizing what that period had done to my mental health. That all started to change when I began to rewire myself to a more positive state of mind. I stopped watching the news, and instead listened to public speakers, and spent all the time on the most important person in my life: me.
It took some time to program my mind to a more positive outlook. The old program had been running for such a long time. Before I could plant the new seeds, the soil had to be uprooted. Then things started to change for me. I started to love the man in the mirror again. But last year when I started to connect with people online, I had a relapse. I had a chat with someone who had gone through a similar period. I broke down and for two and a half weeks, and I was back in that solitude period. I had to endure the pain all over again to process with them.
It was only afterward that I realized that I had been carrying the trauma with me for eight years. The memory and trauma will always be there in a way, I guess. But it was so freeing to let a whole lot of pain behind me for good. Now I have a clean garden in my mind, now I get to plant the seeds that I wish to see blossom.
Does reading AxSpA patient stories help you in your journey?