Turning my Negative into a Positive

FELICITY 

In 2013 I was in my second last year of school with endless opportunities ahead, however I fell ill quite fast. I was always dizzy, I was tired all the time, walking was a struggle, simple tasks became difficult. It was quite scary because I went to bed one night and had no idea that would be the last time I would be ‘normal’ and ‘visible’. After numerous doctors’ appointments, scary thoughts and experiences I was told I was suffering the aftermath of glandular fever, which I unknowingly went through. The next few months were tough at school with low energy and different symptoms but I managed to pass my exams and made it to my final year of school. I thought I was getting better but it was only the start. My symptoms kept lingering and in 2014 I was officially diagnosed with CFS (chronic fatigue syndrome) because of the glandular fever.

2014 had some perks but it was a horrible chapter of my life because my body was self-destructing and I could not do anything about it. I was in my last year of school, the most crucial and I did not think I was going to make it. From the countless times of being bed ridden due to the extreme fatigue or my whole body feeling like lead. The loss of appetite, the swollen lymph nodes and glands, the hours I spent crying out of frustration, my body feeling numb from the waist down. The muscle fatigue making tasks hard and the difficulty concentrating on tasks because the fatigue made me feel as though I was stuck in a haze. The muscle weakness particularly in my legs because it felt like at any moment I could collapse. Most days I was screaming for help on the inside but looked fine on the outside because CFS is invisible. Moreover, I developed depression and found it difficult to voice these struggles, so I felt isolated. I was living in hell.

Nonetheless, with a lot of support and determination I made it through the year and passed my exams. In 2015 I was studying again at college but my mindset began to change. I wanted to educate those who did not understand my struggles, I wanted to create awareness in my local community. I was done suffering in silence. I was fighting back. Firstly, I created a Facebook page called Chronic illness fighters so others fighting their health had a place of comfort and support. Furthermore, it was a place to educate family, friends and strangers about mine and other peoples struggles. I then started blogging so I could go into more detail about my limits and what triggers CFS flares so those around me understood me better. I became vocal on instagram about my health and made friends who were going through similar illnesses. I have spoken to the newspaper and two mini stories were published about my goals and why I stopped suffering in silence. I have made speeches at rotary clubs, I have written for websites, I have even made a mini film about my overall message to people suffering from any type of illness. Writing these accomplishments may not sound a lot, but the endless hours I have put into writing, publishing, speaking and travelling around my community takes a lot of time and energy which I do not always have. But I am slowly learning great things take time and eventually I will complete all my goals.

Quite recently I read an anonymous comment about someone not wanting to hear about people being ‘tired all the time’. It was not directed at me or anyone, but it hurt because it felt as though it was directed at CFS. It is this lack of understanding that motivates me to keep advocating in the community. People tend to assume fatigue is the only symptom of CFS and that ‘everyone gets tired’. Yes, everyone does get tired but with chronic fatigue long hours of sleep make no difference, the fatigue lingers and makes life hard. Furthermore, it is the other debilitating symptoms that get lost in the title, the depression, the loss of freedom to do whatever you want without having to pace yourself so you do not suffer for days. It is more than just the fatigue. It is the constant battle to live each day.

I am also prompted to keep voicing my invisible battle because I am not the only one fighting their health. I cannot speak for everyone’s individual illnesses and their symptoms, the one thing we all relate to is lack of understanding. If more people were compassionate and less judgemental, there would be less stigma around chronic/invisible illnesses. I read countless stories of people struggling to get people to believe them which is ridiculous. Some people are less vocal for different reasons but others become scared to speak out because of the nasty comments making us feel even more ‘invisible’. I am prepared to get up and speak to strangers but truthfully it is quite difficult to talk about the things I am not able to do freely or at all anymore. It is conflicting talking to about my dark battle with depression because of my illness. However, it is slowly abolishing a negative stigma, it is helping me heal, it is helping others in their health battles, it is educating people.

I want to be heard. I want to be visible. This illness is not going to defeat me.

Felicity's Instagram: @fliss260496

Felicity's Facebook: Chronic Illness Fighters   

Holly Gouldthorpe