My story – Sam
Picture this, a 14 year old boy walking along the coastline of a small village in Wales. Sunshine is glistening, happy family chattering away, but the boy simply cannot keep up. You see, the boy has been suffering with pain in his back for a while now, but on this particular day it seemed a whole lot worse. The boy loses his balance and falls to the ground in agony and sat still on the hard floor for 15 minutes embarrassed as strangers walked past staring at him. This was the exact moment in which the boy realised his pain was not normal and he could not simply shrug off the pain and keep quiet anymore.
Hi, my name is Sam, I am currently 17 years of age and that boy was me. From that moment onward, my life felt different; my confidence was at an all time low and I felt completely lost. I wanted to see the world, but that felt simply impossible with the pain that I had to withstand. I had consultations with multiple professionals and there was no common theme to their conclusion. One told me, the pain was in my head, almost as if they were denying the fact that my back pain was real. Another one told me it was just growing pains, however I knew that this pain was way too severe to be that.
From day to day, I began going out less and less, to the point where I was restricted to my room for the most part of my day to day life. I didn’t feel good about it, I didn’t want to feel lazy – nor did I want to let people down, but it felt impossible to overcome this mountain of pain that had chose to stand in front of me.
One thing that really helped was the option for a wheelchair, not as something to rely on, but something to bring with you and give you the confidence of having another option in case things get too much.
In the first half of 2023, a beam of light came into my life in the shape of a rather rotund golden puppy called Roly.
Despite him being a pain in the backside to care for, he gave me a lot of confidence and really motivated me to do more for him, after all this dog isn’t going to train itself!
I loved him so much and without him I simply would not have made it this far.
If you’re new to all this and don’t have an EDS diagnosis but believe that this might be what is causing you pain, I highly recommend pushing for a diagnosis. As soon as I got mine, it really boosted my confidence; the days of me being told it was in my head were over and I could finally prove to people that my pain was real. My main point that I’ve been trying to make across this entire clump of writing, is to not stay silent. Don’t feel afraid to tell people you are struggling. That is the first step to seeking help for your pain. You aren’t letting anyone down by informing them that your suffering – if anything it takes strength to open up.