There comes a moment in the life of every person who is chronically sick where you need to decided how you’re going to survive. That moment came to me last fall. It suddenly became very clear to me that there was a very real chance that I may never get better. That I would wrestle with this disease off and on-sometimes winning, sometimes losing in a very real way-for the rest of my life. And I couldn’t let that stop me from creating a life for myself, a life that I could enjoy, one that would fulfill me and one that I could extract pure happiness from.
I started small by setting a goal: go back to school in the Spring as a part time student. That gave me a good few months to get my health to a stable point that would allow me to go out into the world and be a productive human being again–part time, at least. With that goal in mind I set about doing everything in my power to be strong and healthy; physically, mentally and emotionally.
Everything was in place. I had signed up for my classes, I had met with my advisor, a ‘going back to school’ wish list had been made on Amazon and I had picked out a stellar outfit for my first day of classes. I was ready. All that was left to do was see my Lyme doc so she could give me the big green light. This is the point in the story where two totally opposite things can be true at once, even though you may not understand how that can possibly be.
I had put the work in and I was decidedly getting better. I felt stronger, happier, healthier. My parents agreed. I was so sure I would get that green light, and I did. My doctor was very pleased with my progress and really happy for me and so excited for this new chapter in my life. Yet. My blood tests confirmed that I had two new coinfections (Mycoplasma and Parvo Virus) and a physical showed that I now had Tachycardia. How could this be?
Lyme is a vicious, relentless disease that will not let go. Ever. It is a certainty, for me in my life, that Lyme will always be here-right up until the end. Sometimes you’ll find that you feel great and getting better every day, yet your body will silently be failing you—something you won’t notice until you’re hitting the floor.
Some people will find symptom free living for a long time, maybe forever. Some will struggle every single day of their lives with this disease. I am here to tell you, as some who struggles every day, that it is up to you to persevere in spite of the immense odds against you, to survive in the face of all the pain. That’s on you. Nobody will survive for you. Be strong.
So, with this unfortunate new information about my condition, I went out into the world, armed with new meds, supplements and became a student again for the first time in five years.
It wasn’t easy.
Here are some of the lessons I learned:
The first thing you’re going to need is an amazing support system; friends, family, pets, inanimate objects that you just really love a lot, whatever. To even make it to the first day you will need constant reassurance that you can do it-because you can. You won’t always believe it, especially when it’s coming from yourself. This support system of folks and furry friends will keep you calm and level headed. They will listen to you spiral out of control with all of the ‘what ifs’ and respond to you with kindness and maybe hugs, if you’re into that. You will need these people because you cannot do it alone. And that’s okay.
The next hurdle you will need to overcome is your expectations of yourself. It’s simple: just be realistic. Disappointment is an inevitable symptom of life with a chronic illness. So set yourself up for success. I signed up for three classes fully aware of the fact that I would probably need to drop one because it would end up being too much. That’s alright. It was nice to try, though, and see where I was at. Of course I was bummed that I couldn’t do three classes, and I certainly put myself down for a hot second about it-but now I know my limits. And instead of stressing over three classes, I am going to kick ass at the two that I am still taking. Just be honest with yourself. There is absolutely no shame in being exactly who you are and doing exactly what you can do. Doing any more than you can and having it be detrimental to your health is an extremely uncool thing to do. Dropping classes, slowing down, taking a break–it’s not failure, by any means, it’s just change.
Listen to me now, because this is intensely important: listen to your body. Your Mom will think she knows best, but she doesn’t. It’s you. You know your body better than anybody, so just listen to it. Never do more than you can handle; physically, mentally, emotionally. There’s no reason to get run down when you’re an expert on the subject of you. You absolutely will want to do all that you can do, but I am here to tell you that you can’t do it all. You will not survive life as a student at that rate. Be kind to your body. Listen to it, whisper back to it with love and never do anything that would make you uncomfortable. If you need a nap, by all means take a nap. Do what your body needs you to do.
One thing you will definitely want to do is communicate. Talk with your teachers, reach out to the on campus disability services/accommodations and find out what they can do for you. Keep your doctor in the loop on how you fairing. Do you see a counselor? Tell them everything. Your friends, your parents, your pets, your pillow? Tell all of them, too. Open communication will keep you sane. And honestly, having a chronic illness is the perfect excuse for any and all help or assistance you can get. Don’t be ashamed of that-ever. Embrace it. It is simply who you are and you are fantastic-sickness and all.
It is really important that you take care of yourself. Keep on your med schedule, rest, SLEEP, eat well and often. Do everything in your power to stay on top of your health and make being a student and getting better as successful as possible. You will not make it if you don’t take care of yourself first. And remember that your family and friends will nag and constantly ask you how you’re feeling—it’s because they love you. Don’t get too irritated with them.
Lastly, be open. Be open to it all. If you’re open to it, you will have the most amazing experiences. You will meet people, learn things, create things, have so much fun and it’s all there for you. You simply have to reach out and grab it. You may discover passions you didn’t realize you had-I certainly did-and it will change your whole world. You’ll learn incredible, new things that could change you and the way you think about your life. Some of the people you will meet may leave handprints on your heart, they’ll change you, too. You will learn from them and grow in ways you thought you never could. Isn’t that wonderful? All of these things can happen to you, so just open your eyes and look around because you are here. Here for it all.
Life is for the living. You may be sick, but you are alive-that is an undeniable fact. And you are not your illness, even though sometimes it may feel that way. Going back to school with your chronic illness certainly won’t be easy, but it will be so worth it. In the ever hilarious and eloquent words of Jenny Lawson “I’m not always good at everything. But I am very good at being me.” So go do that. Be you. And be great.