Allow me to introduce Rachel, my guest blogger today. Rachel and I met through following each others blogs. Rachel blogs at DoILookSick. I thoroughly applaud Rachel for what she is going through and all the information she shares on her blog. I am amazed at the wonderful video clips and humor she manages to inject as well. And now I will let Rachel talk to you about chronic illness.
My name is Rachel, and I live with chronic illness. I used to live in spite of chronic illness, but as empowering as that may sound, it was actually quite detrimental to my mind, body and soul.
So what’s the difference between living with and living in spite of?
Let’s start with living in spite of. Living in spite of illness is what most of us are taught to do from a very young age, and for the most part it makes a lot of sense. You go to the doctor when you need to, take medicine or take a day off, then go back to life. I think that most people, when they find out they have a chronic (read: incurable) illness, try to maintain this cycle. It may work for a bit. You’ll likely end up at the doctor’s office more that you’d like, but after that you think you can go back to life.
Inevitably, though, you’ll eventually have to face facts – you’re sick. Your body is different than most people. There’s a new part of you that you aren’t fond of or proud of, and you’ve tried to hide it even from yourself. This is just how we’re taught to view illness. When illness is fleeting, like a flu or a stomach bug, you stay home and hide it. When it’s here to stay, it becomes a sort of skeleton in your closet. But there will come a point where you need to sit down with all your demons and work things out. Strike a deal. Say “look, I can’t keep denying you’re a part of me. We need to figure out how we’re going to get through life. I don’t like you and you don’t like me, but we’re stuck together and we need to make it work.”
The first step is to stop hiding from yourself. Let yourself be allowed to acknowledge symptoms for what they are. Don’t tell yourself you just slept poorly last night – be honest. Think “That feels like my chronic pain flaring up.” You’ll feel more in control when you are able to know yourself and your cycles of pain. You’ll be more adept at collecting data and noticing when your illness is worsening or getting better, even in the smallest ways. This is true empowerment – not “living in spite,” but “living with.” Not running away, but running with. Not hiding, but wearing your heart boldly on your sleeve.
Being honest with one’s self can make all the difference in a life with chronic illness. You will undoubtedly test the waters with other people, too. Doctors, family, friends…. along the way you’ll try to share your experience with honesty. Sometimes you’ll regret it. Sometimes people will make you feel ashamed. Other times people will embrace you, care for you, and perhaps even share their own invisible struggles. Neither way really matters. It may give you grief or a new friend, but in the long run your relationship with yourself is the most important thing. It’s very important to have a support base and even, if you feel so inclined, to reach out and share your story to raise awareness. But when it comes down to it, you’ll need yourself to be there for you more than anyone else. When you’re on the operating table under anesthesia, when you go to sleep at night, when you are truly alone, you’ll want to be a friend to yourself.
When you’re living in spite of, your mind chastises your body. Your mind will talk down to your hurting body. You won’t be there for yourself. You’ll say “I live in spite of all the crap you put me through.”, cross your arms, and turn away, when what you really need is to be gentle with yourself, own what you have, and work through it.
When my husband and I were in pre-marital counseling, we were taught to get married in the mindset that “divorce is not an option.” To look at each other, imperfections and all, and say no matter what, for better or worse, I’m yours. To work through the hard stuff and never abandon each other. To never lose hope. How much more should we treat our very selves this way? Divorce is not an option. You are stuck with yourself for better or for worse. Love is always a choice, and you must choose to love yourself – imperfections and all.
Well said. I think some people are afraid to admit that what they have is incurable (in my case MCS) and that if they admit it they’ve admitted defeat. But you have to start healing from where you are — not where you used to be — not where you hoped you’d be. As you say, only living “with” the illness can allow you to do this. Thought-provoking post. Thanks. 😀
Thanks very much! I really admire your writing and it’s an honor to hear such praise from you. 🙂
I agree Colleen. For a long time I refused to stay home from work when I was doing IV’s and experimenting with new medications because I thought to give in was allowing the illness to win. I eventually had to realize it was going to win no matter what.
Great post. Thank you. And here’s a song that I recommend for anyone who is willing to face the music and live up to their chronic disease: BETTER DAYS, Eddie Vedder.
Thank you for commenting. I will check out that song.
One of my personal anthems. 🙂
My chronic illness is cancer. Even when I am in remission the cancer still casts its ugly shadow. My life has forever changed and some of it has been for the good. I live in spite of the chronic illness and use each day to try to help spread the word about health and diseases.
A wonderful post. Thanks for sharing it.
Karen, you are doing an amazing job spreading awareness about health and diseases as well as being an inspiration.
Reblogged this on Do I Look Sick? and commented:
I wrote this piece a while ago as a guest post for my good friend Katherine’s blog. It’s about one of the most basic foundations I’ve built this blog and my life on – living with instead of living in spite. 🙂
This weekend I’ll be donning my Chronic Travel Bug gear and going on a big road trip across the Southeastern United States, so if I do have time to post, it’ll be quick photo posts with in depth recaps later. I can’t wait to tell you all about it!
One more announcement – if you act quickly and hop on my facebook or twitter pages, I’m running a giveaway of $5 off anything in my store! The rules are simple – comment or tweet a link. First one to make me laugh wins! Be sure to share and re-tweet!
I understand you, Rachel, for having chronic illness. Thank you for sharing. You make me realize to embrace the chronic pain I am going through.