So You’re Newly Chronically Ill?

First, let me say, welcome to the most exclusive club on earth. Anyone can get rich and become part of the 1%. Anyone can get into some secret society at any college. But very few will develop an illness that dictates the rest of their lives. If you’re super special, like me, you’ll even get to join twice in your life, like me. (Its considered the Platinum membership). Everyone has their own ways of coping and adjusting. If you’re not like me, you’ll reach out to support groups and utilize social media resources to learn more about people like us. If you are like me, you will wear a mask of sarcasm and bear your weight alone until those rare moments at parties when you’ll make a drunken joke relating to your childhood cancer and make everyone uncomfortable… Ah, classy!

Regardless of how you acquaint yourself with your new life, don’t try to talk yourself into thinking you can maintain the exact same life you lived before. After all the tests and procedures you will go through, it will stick to you like gum. It decides your nightmares, it decides what charities you participate in, it decides colors you can’t stand anymore and smells that bring back vague memories….

Don’t misinterpret my tone! I’m not being pessimistic, I’m being as honest as I can with you, because from here on out, it’s going to be hard to find people to be blunt with you. Anyone who doesn’t go through this themselves will never get it. People who see their family members go through it will have their own hell to deal with, and it’s the closest to understanding that they can get. Frankly, I think what they have to go through is even more painful than what we will go through. There’s no amnesia medication for family.

Now, let’s discuss the first steps for adjustment. If you are stuck at home for a while it’s time to build up your daily routine. Every day you need to wake up and get dressed. If that means in your yoga pants and a sweatshirt, very well. If you’re like me and a little vain, wear real clothes. Or at least cute sweaters and knee socks. Find a good tinted lip balm, I like Burt’s Bees in Hibiscus. It adds a little color to your face without having make up to wash off at the end of the day. Since you have free time now, make your shower routine as luxurious as you can. Don’t push yourself to shave, it will take up too much time and the risk of cuts is just not worth it. But make sure you exfoliate, and lather up on lotion afterwards. Keep your nails nice. If you are a nail biter, try to stop (I know, I know) consider this: you are stuck at home for a while, might as well take advantage and grow those babies long and strong. Even if you aren’t leaving the house, give yourself a spritz of perfume so you can smell nice, even if your sweatshirt is on day 5. Invest in fluffy socks, wear them always. Make your room fluffy and soft and warm with blankets and candles. Do what you can to keep it clean and organized.

So, you’re awake and dressed. Time to do. Fill up your music player with music you always said you would listen to; load up your Netflix queue with documentaries that interest you so if you are bingeing, you are learning something. What’s your passion? If it’s more left brained I have no guidance, play online chess or something. If you are right brained, create! I chose to paint, write, and work on my photography. With Gossip Girl or Taylor Swift playing in the background of course. As a bullet journal user, I make the effort to write out a weekly spread and fill it in with goals which has turned out to be surprisingly helpful. I might not be leaving my house, but I make the effort to make a life for myself. If you spend too long drugging your mind watching show after show you will lose yourself. Just because your life is different, does not mean that your life has to be lost.
Once you get an inkling to join the real world, do it. Don’t talk yourself into staying hidden longer than you need. You can start out slow, like getting coffee with a friend, or go big and grocery shop. If you don’t want to share your secrets with the world, then don’t. You get to choose how much people will know. You might have an invisible chronic illness, and you are totally allowed to use that invisibility to its fullest extent.

The most important thing is that you listen to yourself.
Don’t overdo it, don’t push yourself too far.
But don’t forget to keep living.

This will change your life, but you get to choose how much it gets in the way.

~Raelee

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5 thoughts on “So You’re Newly Chronically Ill?”

  1. Amazing job… Most people don’t get it until they get it… So many young adults need these written words to help them along in this club.

    Liked by 1 person

  2. Beautifully written Raelee and wonderful advice. The best advice I was given was to get dressed every day, even on the days when I just wanted to stay in my PJs, put on tinted lip balm – and while I still had eyelashes – a bit of mascara. I loved to sit in the garden in the winter sunshine and read books and write in my journal. Oh and Briana would occasionally make cup cakes which helped enormously.

    Liked by 1 person

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