To the 'New Person' in My Life, From Your Chronically Ill Friend
Dear New Person in My Life,
I want to be your friend. I want to share raucous laughter and crazy adventures with you! I want us to build the kind of relationship that lasts for decades, with inside jokes and countless sleepless nights spent staying up ‘til dawn just to talk. No matter what happens, good or bad, I want to be able to share it with you and know that you will do the same with me. I want to go cool places with you, and be at your wedding, birthday and all the important and unimportant, dates in between.
But that isn’t always how it will be, and what I need you to understand is that I’m not an unreliable flake. I’m really sick, and sometimes the two can look like each other.
I suffer from multiple degenerative and debilitating chronic illnesses and I can’t control whether or not I’m able to do things from one day to the next. Though my heart may want to be with you, the reality is that my body can’t always follow through. When things are bad for me (which is often), I will cancel plans with you more than I will keep them. And when I do keep them, I will probably show up late, leave early, and/or look like I want to be anywhere else the entire time. I may even fall asleep in the middle of hanging out with you, or need to be rushed home so I can collapse in a heap for days. It’s always embarrassing.
This wasn’t always my life, though. I went to college, earned my degrees with high grades and had good jobs that paid well afterwards. I also had multiple hobbies. I used to go dancing two or three times a week and then camping on the weekends. It wasn’t part of my plan to become totally and permanently disabled before I reached 30, but that’s what happened. As a result, my chronic pain, fatigue and nausea have eroded my ability to function. Now at 35, I can’t work at all. I can’t always keep my plans. Heck, I can’t even take care of myself from day-to-day. On top of that, all of those things have contributed to my growing anxiety and depression, which can make it hard to put myself out there, because it can convince me I’m not wanted in the first place. (Depression lies!) Worst of all, sometimes the way I’m feeling makes me lose my temper and patience. Not because I’m a mean person, but because it’s hard to be pleasant when it feels like your skeleton is on fire and there’s an angry kitten trying to claw its way out of your stomach. So sometimes I hide away from everyone else to focus on getting better so I’m not such a righteous bitch to be around. (See how nice I am? And look, I’m kinda funny too, in a dark, twisted sort of way. And yes, my humor is part of the package as well. As long as I can keep laughing, I can keep fighting, so I promise to do my best to keep the laughter going strong!)
There may be times when it might seem like I’m not interested or I’m blowing you off, and I need you to understand I’m not. I really do try my hardest for my friends, but my best effort may still seem like not enough, or even selfish from the outside. It may seem like I’m always making everything about me and that I have no regard for the feelings or expectations of others, when in reality literally every decision I make and action I take is done after careful calculations to determine how it will impact the people around me. Maintaining a balance with my health is a never-ending battle where the rules change daily. I can be fine one day, and bed ridden the next. Every time I make plans, it’s a gamble as to whether or not I can actually follow through. I try to bet when I know the odds are in my favor, but I’m not always lucky. If I cancel or bail in the middle of our plans, know that it’s because the rules changed on me, and however disappointed you may be, I’m feeling it a million times worse. No matter how hard I try, no matter how important it is to me, I cannot control my health.
But what I really need you to know is that if you take the chance on friendship with me, if you have the patience to weather the storm in hopes of a rainbow at the end, you won’t find someone more appreciative of your effort. When you come over and watch TV with me and don’t complain because I dozed off (again), it means the world to me. When you send me a text message just to say “hi” or share a funny picture with me, it means the world to me. When you invite me to things we both know I probably can’t attend, it means the world to me! And I will express that appreciation in every tangible way I know how when I’m having my good days. I will always work to make sure I can give you as many of my good days as possible, because you are part of what makes them good. Know that you will always get my best, and I will never take you for granted.
Living with a chronic illness is difficult because of the symptoms, but tragic because of the way it can tax you emotionally. While the list of things I can’t do is always growing, sometimes it shrinks and that can be confusing. It can also tempt me into making a mistake. My symptoms fluctuate wildly, and sometimes so does my hope and happiness.
Only two things remain consistent: I never know what tomorrow holds, and my friends are the source of my strength and will to keep fighting. It would honor me if you would join among those who give me strength. In exchange I promise to afford you the same level of understanding and respect you show to me. When you think about it, that’s a pretty solid foundation for a good friendship!
Sincerely,
Sally-Rouge
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.
Sally-Rouge is an artist, author and advocate living in the American Southwest, where she recently relocated from the Philadelphia region to help mitigate the symptoms of her multiple chronic illnesses. Deep in the sandy desert, she courageously battles against fibromyalgia, Ehlers-Danlos Syndrome, gastroparesis, degenerative disc disease, and an alphabet soup of secondary conditions. In her previous life before “Total and Permanent Disability,” she earned her degrees in criminal justice (A.S.), political science (B.A.), and education (M.Ed.). She was also an animal rescuer, model, singer, public speaker, performer, played in LARPs and regularly attended and worked at science fiction conventions and events. When her spoons are in the positive, Sally enjoys playing video games, voice acting, cosplay, sewing and all things arts-and-crafty, as well as advocating for things about which she is most passionate. Her favorite causes are pit bull advocacy and dog rescue, disability advocacy, and political revolution.
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