themighty logo

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 percent. 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 — I have granulomatosis with polyangiitis (GPA) and histiocytosis. It’s 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 memories from the tests and procedures you will go through will stick to you like gum. It can decide your nightmares, what charities you participate in, 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 may be hard to find people to be blunt with you. Anyone who doesn’t go through this themselves will never really 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.

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 I recommend trying to wake up and get dressed, if you can. If that means in your yoga pants and a sweatshirt, very well. If you’re like me and a little vain, try to wear real clothes. Or at least cute sweaters. If you like makeup, find a good tinted lip balm. 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. I recommend not pushing yourself to shave, it takes up a lot of time and the risk of cuts is just not always worth it.

Even if I’m not leaving the house, I like to give myself a spritz of perfume so I smell nice, even when my sweatshirt is on day five. Invest in fluffy socks, and wear them always. Or just steal those rubber bottomed socks they give you at the hospital. Oh! And make your room fluffy and soft and warm with blankets and candles. Do what you can to keep it clean and organized (i.e. trash can next to the bed).

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 binging, you are learning something. What’s your passion? If it’s more left brained I have no guidance; maybe play online chess or something. If you are right brained like me, 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 watching show after show you might lose yourself. Just because your life is different, that does not mean 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’re physically able. 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 in my opinion, you can choose how much it gets in the way. The hardest part is getting started.

A previous version of this post was published on Raelee Rowen.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by KatarzynaBialasiewicz