What a Journey with Chronic Pain Taught Me
Updated: Jul 12, 2019
Author: Bethany Dawson
I was only 13 years old when my condition began to fully develop. I had some relatively untroubling surgery, which was my first true taste of illness, the first taste of a meal bigger than I could have ever imagined.
It wasn't until March of 2014, 5 months after my surgery, that I started believing something was wrong. I was still in pain, and nothing made it better. I returned to my surgeon, who - rather offhandedly - decided I had nerve damage. It took four years of pleading for further investigation and of attempts to persuade my doctors that nerve damage was not the correct answer, that a doctor gave the correct diagnosis: a non-radiographic axial spondyloarthopy, or Ankylosing Spondylitis for short.
Those four years were difficult, not only due to untreated chronic pain, but because I felt like I was being ignored and my pains were dismissed. This was not a fault with the doctors who treated me, but rather with being put into the wrong place, which focused on management rather than investigation. These years taught me many things. Firstly, always be assertive. Without pushing for an answer, I would not be in the position I am in, which is one where I am treated for my condition and on the road to wholly managing my chronic pain.
Secondly, I learnt that with perseverance, you can succeed. As a very young teenager with no prior experience of illness, I felt as though my problems were insurmountable. However, I still managed those dreaded GCSEs, those doubly-dreaded A-Levels, and I even got myself into University. Whether it takes a few tries to mount those hurdles, it is possible with perseverance and passion.
Finally, I learnt about the world of invisible illnesses. As a sibling to someone with Down’s Syndrome, I was never uninformed about the wider topic of disability, but I was very naïve to invisible illnesses. I will admit I didn’t know the basic facts, and thus I had to learn on the job. But after 6 years of chronic pain, I believe I’m well informed now. I have had to fight for my own pain to be taken seriously, to be listened to. I have had many a conversation where I have “come out” as ill, to be greeted with the response that “you don’t look sick”, which is simply a part of having a hidden illness.
My journey has been tough, and is one with no ending. But it has been one that has opened my eyes in so many ways, and has made me painfully aware of how many invisible illnesses there are, and how important it is to work towards bringing illnesses out of sight into mind.