The alienating life of chronic pain – Aisling’s Story

Alienation – Did you ever watch Star Trek as a child? The original series or Dr. Who Perhaps?

I guess I’m showing my age. What I’m trying to explain here is that feeling of being an outsider in a foreign land, planet or time zone. Like when Captain James T. Kirk would land on some distant planet that was inhabited by biped individuals that were remarkably like us humans. They may have different coloured skin, pointy ears or bumps and lumps on their foreheads that marked their differences from the landing party.

Often the landing party would change their clothes to fit in with the inhabitants. Surprisingly, and very fortunately for the viewer, these inhabitants appear to be fluent in English. Communication was possible. And in the end all hostility would disperse, captain and crew would return to their ship to boldly go where no one has gone before!

What has this to do with Chronic Pain Ireland? Am I suggesting that it’s run by aliens?

No, not at all. I offered this description to help explain my experience of life with chronic pain. I’m a retired Art teacher, retired earlier than I might’ve wished due to several chronic conditions. I spent most of my life living with pain that steadily got worse and worse.

Getting diagnosed was extremely difficult. It wasn’t until my late 50’s that I got the answers that helped to explain my pain journey. I was diagnosed with Ehlers Danlos Syndrome, the hypermobility type (known as hEDS). This is a genetic disorder which means my body produces faulty connective tissue. This diagnosis linked most of my other symptoms and conditions and helped explain so much. I now consider hEDS to be the lead singer with backing vocals from Hashimoto’s disease, Fibromyalgia, Chronic Migraine, Degenerative Disc Disease and Osteoarthritis. My “Band of Pain” gets supported, from time to time, by minor groups such as Gastric Issues, IBS, Scoliosis, Trigeminal Neuralgia and the like.

“I felt for most of my life that I had to hide my “difference.”

A Vicious Cycle

And you wonder what life has been like? Let’s go back to Star Trek. I felt for most of my life that I had to hide my “difference”. I developed ways of concealing my pain levels. I became adept at planning and organising. However, try as I might, I still felt very different.

The older I got the more restricted my life got. Social gatherings were a no go. Restaurants, cinemas, theatres etc. were off my radar. Travel and holidays were a thing of the past. I was in a vicious cycle of work and recovery from week to week. Friends, family and colleagues never really understood. I felt like a single, party-of-one, that had landed themselves on an alien planet!

Eventually, I could no longer spare the energy to feign similarity or oneness with the rest of the world. I felt exposed and alone.

“I felt exposed and alone, that was until I came across Chronic Pain Ireland”

My Mindset Changed and I gained confidence and assurance over time

“Joining Chronic Pain Ireland was the best thing I did for my health”