Life with a part-time disability
I have chronic fatigue syndrome. This means I check the boxes of being excessively and consistently fatigued without reasonable cause for more than 6 months. I've had it for 7 years now, since age 17.
Chronic fatigue is a nervous system disorder that causes decreased energy and brain function resulting in loss of memory, feeling more tired after sleep, insomnia, swollen joints, headaches, sore throats and fatigue to the point of collapse. My condition is moderate on an average day but dips to severe from time to time. I juggle both insomnia and a deep all-consuming exhaustion. Sometimes it can be so emotionally defeating that I can burst into tears just because I need my boyfriend to perform simple manual tasks that should be so easy for me, like putting my folded laundry away or helping me get into the shower.
Most of you reading will know someone personally with the condition, but probably have no idea the extent it actually can affect someone. What can come off as lazy, unambitious or antisocial may just be the outcome of that person struggling just to eat or shower that day. This is why it's important that something that affects up to 1 in every 100 people becomes better understood.
It was only a few days ago I learned that less than 15% of people with the condition are capable of working at all, even part-time. 25% are on the disability pension, leaving a huge gap at approximately 60% of sufferers who are unable to work but also aren't considered to qualify for the government benefits because they don't know how to diagnose us yet.
This statistic was so comforting to learn that I'm not alone in the lack of respect that is paid to the suffering of an illness the medical community is still trying to understand. Chronic fatigue is a little-understood condition met regularly with condescension by our doctors, and there is so much stigma around the inactivity of sufferers despite science making great leaps in understanding what's going on. Science now proves definitively that we really are sick, and there aren't just hundreds of thousands of people coincidentally pretending to have the same symptoms.
The above statistics on those who work versus those on disability roughly mirror the ratio of people who suffer chronic fatigue mildly or severely, with the majority being too sick to lead a normal life but not so sick that they are completely bed bound. It's believed that chronic fatigue while not inherently a fatal disease is the cause of death for 1% of sufferers, likely due to extended overexertion (e.g. being forced to work to survive) and the inability for the body to recuperate.
I still get cruel jabs about being lazy from family, even though I believe I've proved myself to be an incredibly ambitious and motivated person. So it's nice to know I'm not alone in this terrible limbo of unemployment that provides the unattractive choice between family dependence or homelessness.
I've been out of university for 2 years now but have been unable to apply for a "real job" because on any day I can crash without warning regardless of how stringent I am with self-care, since I'm already a teetotalling vegan.
The trigger could be something as simple as 20 minutes of walking. The more severe crashes are known to last up to 4 weeks at a time, during which I can hardly feed or dress myself and become completely reliant on a carer (i.e. boyfriend). It's near impossible to maintain daily hygiene, eating three times a day and minimum social contact with people of the outside world. (To achieve just one of these goals would be a good day.) In a severely fatigued state I can lose track of date and time and suffer confusion between dreams and reality. Basically, I live with what would qualify as a disability for a few weeks at the time, interspersed with periods where I could theoretically lead a normal life. Chronic fatigue is my part-time disability.
Some days I feel great and am able to hide it from the world because I love to walk, be active and keep busy. The good times can stretch for weeks. This is when people see me and form their opinions about my health and my capacity in life. Other days, the days you won't see me, I sleep in til 5pm and can't manage anything more intensive than rewatching old TV shows I've already seen. Anything else is too strenuous for my exhausted brain that finds the simple act of consciousness confusing and overwhelming.
I almost didn't graduate university because I couldn't make it to class, and it might be years yet before I can pursue my career properly. Some people with the condition never manage to hold a traditional job, and that's a scenario I have to accept could become my reality.
So do I give up? Hellz no.
I now run two businesses from my couch - a fair fashion label called Saheli Designs, and I'm starting as a freelance writer for ethical businesses at jaclynmccoskercopywriter.com. These allow me to work if and when I'm capable, and continue to contribute in a positive way towards bettering society. While wearing my pyjamas!
I'm also studying a Diploma of Counselling majoring in Abuse & Trauma and have enrolled in a Master of International Public Health to start as soon as the Diploma ends. Both are online, making them accessible to me. My brain can be my own worst enemy, but that doesn't mean I stop exercising it.
I might be housebound now, but one day if I get better I could achieve something really important for women in developing countries with these combined qualifications. I'm not going to run the risk that if I eventually recover I'll have just wasted a decade feeling sorry for myself instead of being proactive!
I have a lot of can'ts to work with.
- I can't work on a set schedule or roster.
- I can't exercise.
- I can't spend much time with friends.
- I can't run my own errands.
- I can't contribute to the social justice community as much as I'd like to.
But I can definitely have ambition, set myself important goals and be an active part of monumental social change movements. I do still travel, practice self-care and live a fulfilled and gratifying life. I find it difficult to leave home , but I have a tight-knit community of friends that can be found online any time through social media.
It's important that we recognise the very real limitations people living with CFS face and the pain of these restrictions, but that we also don't write these people off as invaluable. Our worth is not measured by our economic output. Everybody is valuable and important whether they invented the iPhone, won a gold medal or spent their life confined to a bed.
The job you work in is nothing more than a trivia fact about you. It does not define you as a person or determine your worth. And on the flipside, being unable to work an able-bodied job does not make you a lesser person.
I've lived with chronic fatigue for 7 years now, and I don't know how many years I have left to go. Maybe it'll last all of my years. What I do know is that having a part-time disability is just one fact about me; it does not make me who I am and it's not a reflection of my personality or any choices I've made. I choose to stop being defined by things that are outside of my control, and I invite you to stop defining others by the same measure.