RAiISE Your Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with invisible illnesses and conditions.
Meet Molly, a young person living with Fibromyalgia and Depression. This is her story…
For the first few hours of this story’s lifespan, I had written one word; I just sat staring at it. It’s a big, scary word, and it’s an even bigger and scarier condition. Fibromyalgia. Nothing would have prepared me for how much it would affect my life.
I have always been slow and heavy. There were times where I’ve been fast, like a young Lightning McQueen. At one of my sports days in first school I won the sprint race, I still have the stickers and photographs to prove it. I loved sports, the adrenaline rush kept me eager. When I was six years old I joined a martial art class; Choi Kwang Do. I felt like I had a place to belong for many years. I achieved two black belts at an early age and was part of the leadership team. I represented the Surrey Demo Team twice in a worldwide competition, coming 2nd in Atlanta, Georgia in 2012 and 3rd in Chessington, London. I had been encouraged to become an instructor by the master where I practiced. I was well respected. I was a mixture of Sporty and Ginger Spice. But as I grew older, I slowly but surely grew out of love. I didn’t have very many friends towards the end of my time there, my commitments to my martial arts were soon overshadowed by wanting to spend more time with my friends and playing football. It was the one sport I felt I had achieved something with.
In ‘normal’ day to day life, everyone would be complaining that I was so slow. I knew I was slow, I wanted to move faster but I couldn’t. It would cause me to fall out with my family because I was always late and wouldn’t do anything about it. When people used to poke and prod me in jest I’d hurt, they’d just tell me to “man up” or “stop being so silly”.
It wasn’t really until I started doing my GCSEs that I started to comprehend how different I seemed to feel to everyone around me. I was always deemed pretty average academically; mostly second set in my classes, always predicted a middle grade. I remember realising that I was never going to be anything special at school and I accepted it, but I never gave up trying to do better. In PE, I was always one of the sportiest girls. Although, I was arguably the sportiest in my tutor group, when it came around the last sports day for our year group, everyone just signed me up to the majority of the events; because, she’s Molly right? She’ll do it. I said no, I refused. That year I was so fed up of being one of the only people to put some effort in, I didn’t care for sentimental value, I was fed up of losing and feeling the whole weight on my shoulders because I was supposedly some saviour to my tutor group. My lack of confidence was most likely the demon of this time. If I had had the confidence I probably would have done alright. But I never wanted to just do ‘alright’. I was striving for better.
I had also started figuring out my sexuality. I jumped into a relationship with a girl for the first time. Keeping it a secret from everyone because I was so unsure and afraid of their opinions. Spoiler! That didn’t work out very well. Whilst I was juggling my mediocre GCSEs, I had family issues to contend with; my Uncle and Aunt had both been diagnosed with cancer, my Mum and Auntie were in a massive argument. I had issues with my sexuality and my then girlfriend was mentally abusive — although I didn’t realise it at the time. I vividly remember being in such a dark hole that I would just burst into tears in my lessons and had to leave. I remember vividly being told by some that “I’m too young to be sad/depressed”. I had resorted to silently crying in my room because I was unable to think as so many thoughts and problems filled my mind. I threw myself into my Spanish lessons as they were the only lessons I enjoyed and seemed to have I slight knack with. I came out with an ‘A’. I was over the moon. But I had also achieved a ‘C’ in PE, a whole grade below my target grade. I got to thinking, “maybe if I was faster I would have received a better grade?”, “maybe if I wasn’t so average I’d have done better?”, “If my hip hadn’t given way, maybe I would have made it further in the run?”. My heart sunk, I hadn’t done well in one of my favourite subjects. A tiny part of me knew that it was all part of a bigger issue. I went from feeling like a hybrid spice girl to a “Wannabe”.
My first year of college wasn’t as I’d expected it to be. I hid behind a facade and I was in a toxic relationship. I enrolled on a sport course, playing for Chelsea Foundation under 19s. The title sounds fancier than it was to say the least. I remember being the second goalkeeper on the team, I knew I wasn’t as good as the other girl and had many games on the bench to reinforce that. I played one game, we lost. It proceeded to go downhill. I ended up missing months of college as I was bed bound. It took what felt like forever for doctors to figure out what was wrong with me. I was 17 and had to depend on Tramadol to move. Osteopathy seemed to be the most appropriate treatment, I was diagnosed with a twisted spine and a twisted pelvis due to Hypermobility. I weaned myself off the Tramadol – which I was congratulated for by my doctors as it isn’t normally that easy.
When I reached the second year of college, I had a fresh start. I was single, had met an extraordinary, kind, beautiful girl. I was applying to university. I had good friends and I no longer had to exclude myself or felt the need to keep quiet about myself. I was able to move. I was playing more games and doing more training sessions. I was fit and healthy, or so it seemed. On the last game of the season, we had a 4-2 win; I tore two ligaments in my ankle. Just my luck!
This is when my health started to really deteriorate. It was like I stepped into a trance. It was frustrating, being so happy but being so sad. I had achieved the top grades to get into the universities I had applied for. But, I knew something needed to change. I had plans to go interrailing (travelling around Europe by train) and work in my gap year.
In the meantime, my Mum had been doing some research and spoken to one of my aunts who has the same condition as me. This is when she started to realise that I needed help. We visited a Rheumatologist at my local doctor’s surgery. He was puzzled. I went through months and months of research, blood and urine tests, and speaking to various people. There is not one thing that we didn’t test.
We decided to go Private and booked in to visit a specialist. My Mother and I felt that being on such high doses Naproxen, Co-codamol and Melatonin was more than enough medication for me to be taking at my age. Even my GP agreed.
I remember my appointment so vividly, which is ironic bearing in mind the awful ‘brain fog’ I had, and continue to be, plagued with. He simply asked me, “So what do you think is wrong with you?”. My answer was a flood of tears. I said “I was hoping you could tell me” with a crack in my voice. I opened my eyes to see a box of tissues. The doctor was kind and had a good sense of humour, exactly what I needed.
He tested my hypermobility and put some pressure on certain points in my body to see if they were tender, which they all were.
“I think this is a case of Fibromyalgia and localised Hypermobility”.
I sat up and cried. A part of me hoped that this would be a short time illness or something easily curable. I felt a multitude of emotions; relief, anger, joy, sadness. He talked us through potential reasons why I could have this illness and what I could do to improve my health.
I sat quietly, not saying a word, with tears streaming down my face for the whole journey home.
I have lost many friends, my confidence and feel like I have been deprived of a fit and healthy life. I have been called a liar and snubbed.
However, I will make more friends. I will continue to gain confidence. I will raise awareness. I will be fit and healthy. I will do well at university. I will take care of my mental and physical wellbeing. I will travel the world.
I am not a normal 18-year-old. I am not unreliable, my illness is. I will have good and bad days. I have a supportive partner, friends and family, and we will cope.
I have cried many many tears, and I will cry many more. But I will not let this stop me from being the best me I can be.
I have Fibromyalgia and this is My Story.