Take a Walk... In Some Chronically Ill Shoes.

I’ve talked about awareness on here before, and why it’s so important. It’s part of the reason I have this blog. It’s why I’m a pretty open book when it comes to talking to people (even strangers) about my illness. Awareness leads to understanding, which leads to empathy, which makes the world go ‘round, basically.

Since I’ve gotten increasingly sicker, I’ve stepped my game up a bit when it comes to my involvement in the IBD community. I’ve volunteered at events, spoken at kickoffs, and actively fundraised for the Crohn’s & Colitis Foundation of America. Some people may wonder why someone would want to spend so much time thinking about, talking about, and living around their illness, so I figured I would take this little soapbox I have here on the interwebs and explain.

Many people with illnesses (especially so-called “invisible” ones) opt to stay quiet about their experiences. This is a choice I understand and respect. For some, they do so out of a natural sense of privacy (which, as a social-media-obsessed millennial, I simply do not have). For others, they do so because they may be embarrassed about symptoms (anxiety, fistulas, and rectal bleeding, anyone?) or simply because they can’t find the words to express their day-to-day experiences with illness. And many more choose to stay silent for fear of discrimination–– publicly outing yourself as a sick patient can mean less access to jobs or even losing your current one because sometimes companies can be real dicks about disabilities.

I fall on the other end of the spectrum. I am an over-sharer by trade–– hi, writer–– and somehow lack the requisite embarrassment to stop said over-shares. I’m also incredibly lucky to work for a company that not only tolerates my illness but is actually wildly supportive. This puts me in a unique position where I’m really able to talk about the full experience of being sick.

In 2013, my walk team consisted of 6 very kind souls. This year we're rolling in over 20 deep! 

But why would I want to spend my free time writing about being sick? Thinking about being sick? Raising money and reading up and partaking in online communities, all focused on being sick? Well, it’s a fair question. It might be easier to ignore it and hope it goes away–– that was my strategy for about 5 years after my diagnosis, anyway! But here’s the thing: when your disease gets so bad that you’re in daily pain or discomfort, you can’t not think about it. It’s not a choice anymore. So if Crohn’s is going to take up so much real estate in my brain as it is, I figure I may as well try to make something good out of it.

That’s where involvement comes in. That’s why I’m volunteering for the CCFA’s annual events like their gala and Spin4 Cures. That’s why I’m active in the online chronic illness community, offering and receiving advice and encouragement. That’s why I’m so excited to walk in the Take Steps walk this weekend with all of my family and friends. If I have to be sick, the least I can do is take as many positives from that as possible, and provide as much support to others as I can.

It’s also about control (there’s that word again). I can’t control my illness. I can’t control when I have bad days, or when my body decides the meds I’m on are no longer sufficient. So things like doing a walk to raise money for research gives me something I can control–– I know I’m doing what I can, in a small way, to help myself. A cure might be a million years away, but at least in the meantime, I’m not sitting around doing nothing. I am the master of my own fate. Or my colon’s fate. Or something like that.

And the walks provide something else, too–– a place for patients to feel normal. A place to meet other patients who get it, who have been on the meds you're on, who also desperately miss eating McDonald's sometimes. A place for my parents to meet other parents of patients and commiserate about how garbage this disease is. A place for friends and family to feel less helpless about the whole situation. A place where people know the words "remicade" and "abcess" and throw them around with the normalcy in which you might say "telephone." A place to see little 6 year olds with ostomies rocking it out and smiling and laughing and think to yourself "hey, if they can be that positive and cool about all this, I probably can be, too."

AND we got shirts, because I am nothing if not a woman who loves a matching shirt.

So if you know someone with an illness, and they ask you to support them in their charitable, cure-seeking endeavors, give them your Dunkin Donuts money for the week. Head out and walk with them. It’s the little things that mean the world when you’re fighting off your own body, and every little reminder that our attempts at raising awareness and support are working does wonders for our mental health.

And to everyone supporting my walk this weekend–– my heart is full and my busted intestines are eternally grateful for your help. Thank you for helping me find my silver linings.