Disguising pain

There came a point early on my CPS journey that I became self conscious of my need to talk about what I was going through with others. The problem was that no-one knew how to help me, so I began turning my frustrations inwards. To talk just seemed like I was complaining and no-one was that interested in hearing about my pain.

I believe that was the beginning of my depression. All I wanted to do was scream my frustrations from the rooftops, but it felt like people were tired of hearing about it. I sounded like a broken record and was consumed with my suffering.

My wife was at a loss as to how to deal with me as I fought to find answer’s to my mystery condition. I resented her for not understanding what I was experiencing. I felt like I was driving a wedge between us - or at least the pain was. My marriage took a hit in the first couple of years from when the accident happened. Deep down I just wanted someone to tell me it was going to be okay. That there was a magical solution to my pain that I would soon discover.

I found it difficult to deal with the suspicion of others. People just couldn't understand how much pain I was experiencing. It was even suggested that I was using my pain as an excuse to stay off work and take meds, behaving like an addict. It was enough to get through the day's without being shot down by the comments of others. Even now it's hard for others to believe that I'm in pain each day. The medications allow me to function. I don't have to feel guilty about taking them, without them I wouldn't be able to cope. I had to let go of my resentments towards others. I have only to deal with what's in front of me as best I can, regardless of others opinions.

Image Credit: ©Kelsey Rein

Once diagnosed, it became apparent that my condition was permanent so I didn't want to be the man complaining all the time. I had to learn to walk through my days without complaint. I got good at hiding my pain. It feels everyday like I'm putting on a performance to get through work and home-life but I have little choice. There are times other's forget that I have CPS, I find myself having to remind people if I am experiencing a higher pain day.

I needed an outlet. A way to get out my frustrations without the fear of judgment. A way to share what I was going through mentally and physically. Firstly, I began writing about my experience on my fatherhood blog, www.tripletdad.blog . But the biggest wave of relief came once I found the CPSF facebook community. A tribe of fellow sufferers offering support and experience.

Over the last year I have got good at disguising my pain from day to day. I no longer discuss it much with my family, I have my CPS facebook tribe for that. This blog is also a way to share my experiences - good and bad, and hopefully be of use. It is only a fellow suffer that can truly understand what I am going through. Those are the people I connect to on common ground. I can recommend writing a journal, just for yourself to express your fears and frustrations. Trust me - it helps.

I don't believe that now it would do me any good to complain all the time. If I was honest about my suffering every other conversation would be about what I am experiencing. Now, when someone asks me how I am, I give them the option and ask them if they want the truth. Some people have a genuine concern. But for the most I tell people I am doing okay.

I am truly grateful to the online community that has, and still continue to support me on my journey. Without them it would be a far lonelier path.

Questions or comments? Join the CPS patient conversation at our closed Facebook group or email us at info@cps.foundation