Learning to Fight
The people who you meet on your journey are so important, they can either really help you or set you back. For me, doctors have been central to my experience. As I have mentioned previously, it was a long hard road in discovering my diagnosis and on that road were many, many doctors visits, physiotherapist consultations and scans. Most of these experiences blur together in my mind and all I can remember of those months is confusion and anger however some pivotal moments stand out. These accounts show how different doctors approached my invisible condition, you can use your own experiences to not only find answers but live with them.
PRE-DIAGNOSIS
After receiving a much awaited MRI scan of my spine we had a consultation with a specialist to discuss the results, I went into the meeting pinning all my hopes on finally getting answers after months of searching because if anything were wrong surely the MRI would show something right? But I spent the next half hour being told there was absolutely nothing wrong with me and that my young teenage girl emotions were probably running high and fabricating the pain along with statistics from far off countries like Sweden being thrown in to show how common back pain is in teenagers. To anyone I should have been happy that nothing came up on my MRI but to me it was a crushing disappointment because I knew something was wrong, no 15 year old should have crippling pain for no reason.
I remember sitting in my chair trying to listen as my hands started shaking. I was not only at a loss because there was again no answers but filled with rage because this man was telling me that my pain wasn’t real and suggested referring me to psychologists, I wasn’t being heard. It was a very emotional meeting as it sunk in that I would be leaving just as clueless as I came with sexist, allegations added to the mix. This moment stands out to me because it was the first time in that process that my anger overpowered my disappointment, it put a fire in me to find a diagnosis, prove everyone who doubted me wrong and finally be heard.
Being misunderstood is so common with invisible conditions, often there is little research or specialists to help and doctors don’t know what to do with you so it’s a constant cycle of being thrown from one doctor to another hoping at some point you will find the right one. We all experience this, don’t let it derail you and make you doubt yourself but let these moments make you Stronger.
POST-DIAGNOSIS
Since I was 11 I have been going to a doctor for my feet and ankle problems, she has been with my from the very start and has witnessed the progression of the Hypermobility Syndrome in my body. A week after I was diagnosed there was a Coasteering trip at school where you swim, climb rocky cliffs and jump into the sea. Everyone told me not to go, I shouldn’t risk it. But the months previous to this had consisted of me missing out on so many things while searching for answers - I knew this was one experience I was not going to let slip away. The day before the trip I went to see my doctor before the literal mountain I was about to climb the next day and she told me:
“You are only young once so if this is something you really want to do, do it. You have given up so much take this one thing for yourself, even if you only jump once.”
So I did. And on my third free fall, with nothing but ocean beneath me, I felt a sense of liberation - my constraints lifted, if even for a moment.
Look for people who will understand what you are going through and know when to push you. It is so easy to become scared to do anything, to continue with your life. While these people can boost you up and reassure you, ultimately it’s your decision. I hope you decide to live.