A letter to every friend and family member of people who live with chronic illness, please hear and believe us. And a note to every person who lives with chronic illness, you are not alone and you are NOT lazy.
I am not lazy. I am sick.
I live with chronic illness. Meaning the sick never ends.
It took me a long time, years, to make myself believe that I am not lazy.
I've always been a doer. High school was full of straight As and extra-curriculars. I started uni topping all my classes while volunteering 20+ hours a week. I loved being a busy person. My introvert time would recharge me for more doing.
I’ve always had big, maybe stupidly impossible, dreams. There’s so many things I want to do in life my bucket list far exceeds 100 items. I took a gap year to volunteer then started law school on a scholarship, things I could tick off in my bucket list journal. Then, about a year into uni, I slowly stopped being able to tick off any goals, including the little ones. Even if I set a plan and gave myself deadlines; I'd end up spending my weekends in bed watching Netflix. I eventually stopped going to my classes altogether. Dishes would pile up as would dirty laundry. Weekend visits to my family became fewer and farther between. I couldn't seem to get anything done no matter how much I wanted to.
I argued with my parents. They thought I was being a lazy young adult. Staying up late and sleeping in until midday. I started to think that maybe I was lazy. And I kept thinking that for years. Even now as I live independently in an entirely different state, I still wonder if I'm lazy, if I should just 'buck up and get on with it' as my mother would say.
Having everyone else see me as lazy made me begin to believe it.
But, I am reminding myself...
I’m not lazy. I never was.
I haven’t been lazy a day in my life. I was sick. I am sick.
I simply forgot about all the things my family and friends couldn’t see - the pain tearing my abdomen apart, the inflammation winding it’s way through my whole body and the pure exhaustion that caused. They couldn’t see that I wasn't sleeping until midday because I'd been irresponsible and stayed up late, I slept in because my body needed 14 hours of sleep to function.
My body is using all of its energy to keep me alive. It’s doing the best that it can. How can I ask any more of it?
I’m not lazy, I too am doing the best I can. So how can I ask any more of myself?
Fatigue is not something I can will my way out of, despite my best efforts. It is not my fault.
You might look at my life and wish you could take a day off work to stay in bed and catch up on your favourite tv shows. I know sometimes it feels like life won't stop, I'm not saying we don't all need a break sometimes; I'm saying, please don't look at my life and wish for it. Because I look at your ability to go to work every day, play evening sports, cook dinner on weeknights, hit the bar with colleagues on Friday and still enjoy a cafe and hike a mountain on Saturday and envy you. Not even all of it, I just wish I could go to work for half a day, or make one meal that isn't toast or pasta.
Fatigue is not a choice. A day off, relaxing in front of a movie is a choice. A weekend away to recharge is a choice. Weeks on end being unable to move - not a choice. Fatigue is slowing slicing away little parts of me. Not a choice. It painstakingly skins away the things that make me me, my adventure, my love of making - sewing and designing, my photography, my friendliness, my experimentation in the kitchen, my love of reading. I am not me. I am not choosing to lose myself.
I am a doer. The things we do are not the sum of who we are. But without doing those things I am unable to be me. Adventurous, outgoing, creative, happy.
You might wonder, why don't I do something about it? Haven't I bothered to see a doctor. Yes, about 14. Modern medicine isn't all that knowledgeable. There's things it can't solve. My chronic inflammatory condition and its associated chronic fatigue is one of them. Natural remedies? Tried them too. From changing my diet to lying on a bed of nails, there isn't much you can suggest that I haven't already heard of (and likely tried myself).
I've tried everything. Don't you think if there was a way to get me back I would do it?
This is not my fault. I am not lazy. I am sick.
Sometimes I look at things as a cost in hours. Not like I get paid X per hour so that new dress would cost two hours of work. Like, if I stand on my feet for half an hour to cook a meal, it will cost me at least the next hour in bed plus an extra hour of sleep tonight. Most of you get to just live your life, doing what needs to be done. I have to count the cost of every move, every meal, every chore, even every shower.
I desperately want to make weekend plans with friends and have Friday drinks with colleagues. But sometimes the cost would be far too great. It's taking absolutely everything I’ve got just to wake up and stay alive.
I am not lazy. Living is costing me my life.
My bed is no longer a safe haven, it's a prison. My house is the labyrinth I cannot escape no matter how hard I try and work and research or what meds I take. In the past month, the only time I've left my house is to go to the grocery store twice. That might seem normal now that half the world is in quarantine, but that was normal for me during flare ups before iso and it will probably, realistically be normal for me afterwards.
I am not lazy. I am sick.
That means I have developed a kindness for myself. Even now as I wake up at midday, eat, nap, then ice my swollen eyes, I am kind to myself. Instead of chastising myself for not going to work, I say 'it is okay, you are doing your best'.
I have good days and bad weeks. Sometimes it feels like it will kill me to lift a few fingers.
Most of the time, you can't see it. I don't look sick. To you, I might look lazy. But I am sick.
Think about when you have a cold or flu or tonsillitis or an ear or sinus infection. You don't just feel awful, you feel tired. You've likely experienced sleeping for 12 solid hours, waking up to sip soup, watching a few movies while curled up on the couch, and still feeling like you're exhausted and need a nap. That's normal. That's your body doing its job, fighting infection and inflammation. That takes energy, sometimes all you've got. For you, that ends. For me, that is my permanent state of being.
Chronic means my illness doesn't end. There is no cure. There is no 'better'. So that feeling of exhaustion, I feel that every day as my body fights itself to contain inflammation.
I am not lazy. I am sick. I am exhausted. I am fatigued. Because my body is doing its best.
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