I remember being a sick 12 year old searching the internet to understand my diagnosis of Chronic Fatigue Syndrome. I would stumble across forums of people asking if it is a real disease, and I would angrily write long responses, trying to sound like a sophisticated adult. “Why would people fake an illness that causes them to not be able to do the things they want to do?” I would write. “Why would people want their lives taken away from them?”
I wasn’t going to school and was home with my mum most of the day. I made a Facebook account because I was so bored, excitingly gathering all of my favourite images and uploading them in one large album. I made a Twitter where I made friends with people across the country. I made a Tumblr, then several more, where I was able to find an outlet for my creative and damaged mind to make sense of everything that was happening to me: the black hole of chronic illness. So many other girls were going through the exact same thing and I had no idea.
After I got an HPV vaccine, I became extremely sick. I was diagnosed with CFS, and soon after, chronic Lyme disease. I can barely remember what I did every day for almost two years when I wasn’t going to school. It’s all a big misty memory. But I remember being disbelieved. I didn’t know what feminism was then but I can see it more clearly now, how women are more disbelieved than men. How even a young girl could be “too emotional” or “hysterical”. How many times I was told I was just a changing body, a growing girl, prepubescent. Like every girl who goes through puberty gets a life threatening illness overnight.
But it is because our opinions and pain are attempted to be silenced. We are told our excruciating period pains are normal when they are not, that we must still go to school. Our doctors tell us we just have a cold when we do not. I’m in a sick body and being told that I am not even sick. Now you are telling me to shave my body hair, too. Be thin, but not too thin. Wear nice clothes, but nothing too revealing, or you will get in trouble for distracting men. But my body hair isn’t something I’m thinking about when it is my fourth day in a row without a shower because I don’t have the energy to stand. I will be whatever weight I am because I am trying to do what is best for my body. I will wear the clothes that make me feel happy and confident, and I will yell at all the men who mistake my body as something that is theirs.
I can do all of these things but I am still disbelieved. I have become an angry feminist screaming “BELIEVE ME” everywhere I go. It is because of every sixth grade teacher I had that yelled at me for missing school. The principal, the office ladies, the assistant principal, who thought I was making it up and wanted me to leave. The teachers who let me down at my new school in seventh grade, who I thought would be different. Every person who laughed or stared or walked the other way. All the fucking doctors that told me I was fine. Every. Single. One.
I was diagnosed and treated by two female doctors. I was only taken seriously by female therapists. I was only carefully listened to by female ears. But there were women who questioned me, too. Women who told me I just needed to get over it. And to this day, they have done their damage on me. Even though I know with all of my being that I am truly, seriously sick — sickness that I can feel every second of every day, all throughout my body — there is still a part of me that questions. And it is because of all the mindless comments said to me over and over and over that sometimes I still question if I am being lazy. If I can push through and get to class. If I can just force myself to get up earlier.
So now I practice. My therapist says, “what would it be like if you truly believed yourself?” and I say I don’t know. I do believe myself. I am so hard on myself but I am also so kind. But there are also these voices in my head – the disbelievers – telling me what I can and cannot do. So I am trying to confidently set my limits. Tell people who I am, and declaring for myself the things I can and cannot do.
I can say it in so many ways. I am 21 and I have a chronic illness. I am a woman with a disability. I am someone who cannot walk very far or stand for too long. I have a disease that causes me to sleep 10-15 hours every night. I am a journalist and have just finished my final term of university. I am a writer who will stand up for herself and her pain. I am a woman who can change the world.