Living With an Invisible Disease: Harriet’s Story

I don’t know what it’s like to be healthy. I don’t remember. I went to bed one day when I was eleven and couldn’t get out again. I went to the GP, who referred me to another doctor, who referred me to a specialist, and on and on. Naturopaths, psychologists, anyone who had any history of dealing with sick kids who weren’t getting better. Over the next eight years I’ve been to countless doctors as my parents and I try to piece together why exactly my body decided to give up on me that day, and continued to worsen over time. The symptoms range from fatigue to dizziness, to chest pain to memory loss, to unrefreshing sleep to nausea. Instead of teenage phases, I had diagnosis phases. It started with Gastritis, which evolved to Chronic Fatigue Syndrome. Autoimmune disease came in to play, and with my unsteady heart, Postural Orthostatic Tachycardia Syndrome. My little team of illnesses all come together to form something that isn’t getting better.

Chronic Fatigue Syndrome is a hard thing to explain. It’s chronic, so it persists for a long time, a syndrome, meaning a group of symptoms that consistently occur together, but the word ‘fatigue’ never seemed to really sum up the exhaustion. There’s something so defeating about the bone deep weariness of Chronic Fatigue. Blood like concrete, your body so heavy you can’t lift your limbs. It’s a private illness, because so much of it happens inside you, alone. My bed and I, in our little world of fatigue together. I’m a medical mystery. Why am I unable to have refreshing sleep? Why do I feel nauseous every time I eat? Why is my blood pressure so low? Why is my heart rate so fast? Why have I been absolutely, completely, totally exhausted for eight years with no apparent reason?

I’m lucky. My parents believed me when I suddenly refused to go to school, complaining of nausea and tiredness. That doesn’t happen for everyone. Invisible illness. I spent my sixteenth birthday in a wheelchair, and I used to shower sitting down to save myself the embarrassment of having Mum hold me up. Chronic illness is humiliating in it’s own private ways. Suddenly feeling ill during a meal someone else has paid for and not being able to eat it. Not showering for a week because you can’t stand up for that long. Wearing and sleeping in the same clothes for days on end because you’re too tired to change. Lying down in public places because you’re about to pass out. Abruptly leaving events. The neurological part of the disease plays with my memory. I trail off in the middle of sentences, unable to remember where I was going. On bad days, I watch people talk to me and can’t understand. Who knew exhaustion could be so encompassing? My personality is hidden under years of intense exhaustion that worsened with any activity. I don’t know who I am, it’s disguised by symptoms that make me irritable and unable to think clearly. I’m too tired, I’m too sick. I’m too busy trying to get out of bed.

Chronic illness is crippling in ways I didn’t expect. As a child, I didn’t understand. All I knew was that I felt bad, and the doctors weren’t helping. I made good friends in Year Seven, but once I stopped going to school in Year Eight, I was unable to make anymore. I was either in bed or in hospital. I lived through the couple of friends I kept as they moved through a world I was kept from. I listened as they began experiencing all their firsts; kisses, relationships, heartbreak, drank alcohol for the first time, smoked, experimented with drugs. I was experimenting with my own drugs, ones that came from overseas pharmacies and were meant for 60+ people with chronic heart attacks, not fifteen-year-olds who couldn’t stand up without passing out. Why was I lying in bed, in too much pain to move, too nauseous to eat, too tired to speak, too out of it to be able to watch television, when my friends were at parties, meeting new people, having new experiences? A chunk of my life, from eleven til now, was taken from me, carved out. My teenage years are a black hole of doctors, exhaustion, and my bed. There’s nothing there. There’s no formation period of growth experiences. There’s just my Mum and my bedroom window and doctor’s telling me there was nothing they could do.

It’s hard to acknowledge how sick I am. Chronic illness is not a death sentence. It’s not cancer, it’s not degenerative. I’m safe. I’m treatable. I’m not curable, but I’m treatable. Despite that, I’m very sick. I’m very, very sick. It’s not a death sentence, but it is a life sentence. I look healthy enough. A little too skinny, a little too pale, but healthy. Chronic illness is often labelled as ‘invisible’ for a reason. If it’s hard to describe, it’s harder to see. The inability to explain to people just how tired you are is cruel. The word ‘fatigue’ doesn’t really cut it. This exhaustion is so all consuming, sometimes I wish I could just stop breathing for awhile, so I could save the energy of moving my chest up and down. I wish I could show you my illness. I wish I could point to a wound and say, this is why I feel so bad. I wish I could prove it to you. Just for my own sanity. I wish I was healthy. I wish my body worked the way it should. I wish I could do things whenever I wanted, and not factor in my illness. I wish I could stop making my parents so sad, because they understand what’s happened to me in a way my own brain doesn’t let me understand, to protect myself. I feel sad for eleven year old me, sick and not knowing why. I feel sad for me now, still sick and not knowing why.

I’ve lost some ability to sympathise that I desperately want back. Someone wrapping their hand around my wrist, telling me how skinny I was, how lucky I was, when I was barely eating because I didn’t have the energy to digest. People complaining about how tired they were after a night out, how a cold was disrupting their weekend plans. Chronic illness brings with it a bitter jealousy that everyone else is out living their lives, and you’re not. It’s hard to shake that off. A dark shadow clings to you, whispering about how no one understands, how alone you are, how you’re never going to get better. I was a child. I had no ability to deal with this sudden darkness, this overwhelming need to pull the covers over my head and stay there. I’ve been on antidepressants for three years. The chemicals in my brain would never have been disturbed like that without a chronic illness to come and run wild. Something scary in my chest created by it. Something jealous and bitter that watches my peers and is angry. I want to be like you, it says, I want to do what you do. How can you not understand what I’m going through? It asks. Why can’t you just be grateful for what you have? Why can’t you understand how hard I’m struggling just to turn up for an hour of school? But that thing is dark, and it’s wrong. Just because you don’t understand, doesn’t mean you’re not trying.

Chronic illness is hard, and it’s tricky, and no one knows that better than me, but it’s no excuse to sink into a pit. I’m loved and I love in return. I’m strong, I’m brave, I’m lucky, and I have so much to be thankful for. Cures will be found. Treatment will be discovered. The mystery will be solved. Maybe not now, but one day. You have the power within yourself to choose good, instead of bad. To look for the people who ask if you need to sit down, invite you out even though they know you’ll say no. To choose light. Choose bright. Choose happy. It’s the hardest thing I’ve ever done, to decide I will open myself up to the universe and be happy. Chronic illness brings with it a heavy, black cloak that wraps around you and hides you from the outside world. But with a shake of your shoulders, a deep breath in, you can emerge. I’m sick, but that’s not my defining trait. Just because a bad thing happened, doesn’t mean it’s a bad life.

For more information about mental health visit this page. If you are are struggling with your mental health and need support or just someone to talk to here is a list of Support Services you can access.

Harriet Wilson

Harriet is an eighteen year old student who hates autocorrect and loves her dog. Still learning how to explain her experiences with Chronic Fatigue Syndrome in a world that doesn’t know how to treat it, she is passionate about her windowsill plants and equal medical care. 

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