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The Hidden Struggle of Being Young and Chronically Ill

I’m a 19 year old university student in semester break. It’s a Saturday morning. I woke up dehydrated and nauseas, absolutely exhausted (I didn’t sleep until around 4 a.m.), sore and feeling foggy. I’m sure I’m not alone in this feeling – many other young university students will be waking up feeling ill after a big Friday night. The difference is that last night, I stayed in. I drank a cup of tea, quietly read, and then lay in bed for hours begging my body to sleep. I didn’t wake up feeling like this because of alcohol or partying. I woke up feeling like this because of myalgic encephalomyelitis (ME).

I have had this illness since I was 16. In many ways its severe fatigue, pain and insomnia have become a normal part of my life. But as I got older, and grew more independent, I realized just how dearly you pay when you are forced to give up your youth and live the life of being ill instead of someone just discovering the magic of the world. You pay by getting just a little taste of what’s out there – of love, of parties, of travel, of hiking, of working, of living – and then being forced to give it up before you even try it, before you even have any memories to treasure. I’m forced to lie in bed, wondering if I’ll be able to finish this uni semester as the half an hour travel time takes its toll on my energy, while I scroll through Facebook feeds of friends who are touring Europe, volunteering, dancing and starting their lives.

On top of this is the huge emphasis placed on young people for being so vital and full of energy. Not only do you find yourself sad, lonely, and with the worst case of FOMO in history, but you constantly have people telling you:

“You’re sick? Oh you’re young! You’ll spring right back.”

“Live while you’re young. Don’t stress as much as you do, just relax and go party – you’ll be fine!”

“You should get a job, how else are you going to travel?”

“This is the best time of your life! You’ll never feel better than you do now.”

I want to say to these people that if this is the best time of my life, life royally sucks! How’s it meant to get worse from here? No thank you!

While this illness is completely devastating and life altering at any stage in life, I’ve found you’re even less likely to receive sympathy when you’re young. You’re more likely to be the recipient of glares if you find you can’t walk properly because your legs buckle beneath you, and judgemental looks of disbelief if you park in a disability spot. On top of this is the huge isolation that comes from not being able to keep up with your peers, not having any news to tell them even after months, not being able to go to long parties or out dancing. Eventually the invitations stop coming, and so do the friends.

Not only are you desperate to figure out who you are and to try to choose a career and a life that suits you, you have no time or energy to make a mistake, and you must work it out with the burden of ME interfering with the “me.” How are you supposed to build an identity, love the world and yourself, when you’re not allowed to experiment, explore, or even feel connected to the world? It feels lonely, and terrifying, and like you’re going to let everyone down if you can’t fix your health and be successful. It feels like you’ll let yourself down.

It’s hard to have hope. I’m struggling with it myself right now. But my best advice to give if you are young and sick like me is to learn to love yourself anyway. You have an identity. You have beliefs and a personality, you have kindness, opinions and your words. It might feel like you have nothing. No job, no degree, no experience, no purpose. You might feel like a failure. But I assure you, that is not you. Because becoming sick young also makes you brave, kind, and mature far beyond your years. You can learn to pace yourself, value the quiet times of life and what really matters, way before any of your peers even realize that they need to. I know it sucks. But you are strong. You are incredible. And you are worth every breath you take.

All I ask is that next time, if you’re young and one of your friends has to keep canceling for mental or physical illness, give them the benefit of the doubt. And if you see someone young who is struggling, don’t tell them they should be grateful for their youth, give them your care, because they know all too well what they’re missing out on.

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Thinkstock Image By: nd3000

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