By: Dr Alex Robber
Not many like to share their story and memories of their illness because I didn’t at first, but a while ago somebody made me realize by writing theirs one day and it makes me want to write mine because sometimes it can make someone understand that they’re not the only one that went through it and still going through it alone, sometimes it can help open up, so here’s mine.
My name is Charley, I am 23 years old, I have fibromyalgia, weakened muscles and nerves in my neck that lead half way down my spine n my arms and hands, I have asthma, I also suffer from anxiety and depression, I am still in the midst of testing for other disorders because I know I’m dealing with a lot more than just fibromyalgia symptoms.
This disease has changed me in many different ways, most of the time I don’t feel like my own age and according to some people I don’t look like my age either but it’s amazing what a fake smile and some make-up can do, it can make you look like a normal, happy and healthy person, but that’s not how I feel at all, I feel weak and tired and without energy and in a lot of pain without cure and very little never works and unable to get on with everyday life like others, i feel lost and isolated and i just feel like i am existing but not truly living in this world.
Without realizing for so many years until a couple of years ago, I had been suffering from fibromyalgia since I was 6yrs old, I spent most of my childhood / teen years trying to find out why I always had so much pain and all these various symptoms, all the doctors ever told me as I grew up through the years that it was rising pain or that it was all in my mind or that I was faking it, for many year. i was always off school because of being ill and in pain but no one really believed me, teachers, family and friends just thought i was faking it to stay off school and cancel plans, on the days i did go to school, all i looked forward to was getting home and going to bed, but as usual people just thought i was lazy.
For a few years during my teenage years after it started to get to me even more and having so many people judging me and bullying me, i decided to stop bringing my pain up and tried to get on with life with a fake smile, so i could make everyone else happy, i got fed up of people telling me to shut up and to stop complaining and to stop looking for attention so i stopped talking about any of it and because of that, i also stopped talking about my feelings and because of that, i now find it hard to speak up and talk about my feelings and about how i am feeling, a wall got put up and even now i find it hard to bring it back down, anyways finally school was over and i went to college, well i went 3 times to 3 different ones because the first 2 i had to quit because of how much more worse my illness got but i managed to complete my third one, but it wasn’t easy.
More time and more years passed and i kept going to the doctors to figure out what is wrong with me because i knew deep down that it was more than growing pains, plus that never explained all my symptoms and painful migraines, doctors still had no clue but they put me on crap and low painkillers, so i decided i had enough of this, so i spent a lot of time researching to find out what was wrong with me, i then stumbled upon Fibromyalgia, something i had never heard about before, but i knew straight away that i had it, it explained everything and as I was reading about it, it felt like i was reading about myself of everything i have coped with over the years and still coping to this very day, so i went back to my doctor and told her about Fibromyalgia, she then says it may be possible, so she sent me for tests and scans with specialists and had me checked and poked at, and finally after everything kept coming back clear and after she kept checking all my tender points, she finally diagnosed me with fibromyalgia, and ever since then i always try to diagnose myself first before seeing a doctor which everytime i am right because only i know my own body.
A part of me was so glad to finally be diagnosed and to finally have an answer, but when that moment was over, i went in my room and broke down, it had felt like my world came crumbling down, i knew that my life and future would change even more, knowing i couldn’t go back to college again for something i had been dreaming of doing to do what i really wanted to do in my future, knowing i couldn’t even work because of how bad i already got and knowing there is no cure to fix me, it even changed my thoughts of having kids one day because i learnt it can be genetic and i found out i had gotten it from my biological father which would mean there would be a possibility of my own child having it one day when i was ready to have one, and i didn’t want to take the chance because i would feel like it would be my fault if it did get passed down and i would hate to see my own child suffer the way i have, but then i realised maybe there is that chance it would skip as it has with my half siblings, so maybe there is hope there.
After being diagnosed i kind of became obsessed with trying to find out everything about fibromyalgia, and what i had found in my research scared me even more because when having fibromyalgia you are at more risk of getting other conditions and also your at more risk of cancer, i didn’t want this to be my future, i still needed to understand it all more so i kept doing my research and then i found myself doing research about other illnesses, i couldn’t believe how many there was and that there are so many people out there suffering, all i wanted to do was help them but i didn’t know how, so i made a facebook page for other fighters out there and i try to offer them support and i post information about different illnesses and offer to do research on anything they need help with to find answers.
Later on, i decided to make a support group on facebook so other fighters have a place to feel safe and have support and to not be judged and be around others that understand and soon after i decided to widen my support into other social media to try and reach more people to help them.
It is nice to speak to those who understand what i am going through, but it’s not like I don’t have support in my life because i do, i have my mum now who helps me and supports me, she may not fully understand everything i am going through but she at-least tries and I appreciate her support and help, especially on my worse bad days when i have to cancel plans and not able to help with things or not able to do my own tasks like shopping for example, but everyday i still try to put a front on and a fake smile most of the time because i had been doing it nearly my whole life and its just who i am, but i have learned that i am not my illness, i won’t let it run my life completely, i am still me and that will never change.
All i want to do now is help and support others, i hated feeling like i was alone for so long and i hate thinking that someone else out there is going through this and feeling like they are alone in this hard and long fight, i want to find those people and help them and support them, i want to help them know that they are not alone and that we can fight this together because at the end of the day, we are Warriors and we are in this together!