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Olivia:

Olivia: "Not being believed took away my voice"

Action for M.E. supporter and M.E. advocate Olivia Cole, 18, has had M.E. for eight years. She shared this story with us in September 2017.

I was a completely normal and healthy little girl up until I went to a friend's birthday sleepover. That night, I went to sleep healthy and woke up the next morning extremely unwell. After weeks of resting and endless visits back and forth to the doctors, my health was deteriorating more and more with each passing day. I was constantly told that I had tonsillitis and post viral syndrome, but I was never waking up in the mornings and feeling any better than I did the day before.

After all the back and forth trips to the doctors and a lot of stress, I was eventually referred to a children’s specialist where my mum presented her Google findings on CFS to the doctor, who referred me to Great Ormond Street Hospital. That's where, at the age of 12, I was diagnosed with M.E, two years after becoming unwell.

Debilitatingly ill

During this lengthy two years, I was having to attend school whilst feeling debilitatingly ill every day. Not having a diagnosis meant that not only did my family and I not know what was wrong with me, but also that my school seemed to think that they had no reason to believe just how unwell I was.

After a while I was no longer allowed to be off school and was made to attend even on days when it was physically impossible. My mum would get me dressed in the morning, do my hair and literally carry me to the car. I knew that as soon as I was through the school doors that would be it - I was stuck there until the school bell rang or my two-hour timetable was up. Some days, I was put at my desk and my teacher would seem to just try and ignore me for as long as possible.

Break time was my chance to try and go to first aid to see if anyone could help me by calling my mum so I could go home to bed, but even there, the staff had been pre-warned by teachers that I wasn't allowed to leave. So again I was left sitting there, feeling awfully unwell until break time was over and it was time for them to send me back to  class.

At this time I was only 10 years old and I had nobody other than my family to turn to. The sad truth is that if I had been sent home to rest back when I was a little girl, my health could be far better now.

With M.E, you have to listen to your body and do exactly what it is telling you in order to even try and start feeling better. Rest doesn't help or leave me feeling refreshed at all, but it can relieve some of the pressure on my muscles. Either way, I need rest otherwise my body completely burns itself out of the little energy that I do have and this can lead to my health deteriorating even more.

Sometimes my whole body would completely freeze not only from exhaustion, but also the fear of knowing how unwell I felt to be sitting in school for so much longer than my ill health could take. To teachers this was a sign of weakness, and for this I would be made to feel unbelievably small and worthless next to the rest of my classmates.

Lost confidence

If I had been taken seriously, I could have achieved a lot more in my 18 years and been a far more confident person. Teachers are supposed to look after and do what's best for their pupils but unfortunately I never got to experience that, all because I was unwell but looked fine to them.

This went on until I was finally able to leave school at the age of 16.

You would think that this would have changed after being given a diagnosis from Great Ormond Street Hospital, but unfortunately I still wasn’t believed. This is when the idea for my CFS Selfies project came to mind. I had to make it to a lesson that my school had set up for me at my local library. I woke up feeling terrible and looked in the mirror to see a swollen face that looked just as terrible as I felt. So I took a photo of myself before and after I had applied makeup. It made me realise just how much I paint my mask on and apply a smile to go out and face the world. Unfortunately with M.E., that can sometimes be easier than having to try to explain your situation to people who know nothing about what you’re going through, and do not seem to want to understand it.

That's when I realised that this needs to change. In order to try and make people have a little more understanding of what we have to go through everyday, we should show them first hand! So CFS Selfies was born: a place where sufferers (including myself) could meet others who feel exactly the same as them and talk all things health.

Find yourself

I can safely say that throughout this whole eight years all I have wished for is my health: you truly realise that nothing else matters when it has been taken from you. When your health deteriorates, your old life is replaced with a whole new one, and though it's not a fun or exciting one by any means, it's a life where you have to find yourself and the little things that you love in the every day, and in what the world has to offer.

I went from being a ten-year-old girl with lots of energy to an 18-year-old whose muscles shake when I try to lift my arm. I am now though nowhere near as unwell as I used to be, and this is all the hope I need to know that one day soon I'll be able to fulfill my dreams.

It’s extremely unfortunate that I had such a bad experience with not being believed in my younger years at school, but I am extremely lucky to have such a supportive family who have helped me through it. Not being believed took away my childhood and teenage voice, but no more.

If you’re reading this and going through a hard time with being ill, then please just remember that you’re never alone. M.E can be one hard battle but in the end the warriors always win.

Let's get the word out there...