“At least you have your health.” It’s the kind of thing that grandmothers say. And it’s something that no one has ever said to me.
Because those who know me well know I’ve been dealt a less-than-ideal hand of cards when it comes to my health: crooked eyes and chronic joint pain since birth, ovarian cancer at 20, a stroke at 33 (that still impacts my speech in ways I have to hide), a chronic and sometimes debilitating disease called interstitial cystitis (IC), and a mysterious central nervous system problem that causes frequent dizziness, nausea, fainting and crushing head pain. But, as we say in marketing, “Wait! There’s more!” I have three gene mutations that put me at very high risk of heart attack and stroke, and two gene mutations that make my body unable to process iron ― a disease that, if not well managed, ends in cirrhosis, organ failure, and death.
But grim as it all sounds, I am not a sick person. I’m a successful business owner, and dutiful and happy wife, daughter, sister, dog mommy, and friend. I am ambitious and optimistic and unafraid of the future. So when I was invited to write a guest blog for Sick Biz, I literally thought Hilary had me confused with someone else. “I’m not sick. Why in the world does she think I’m sick?”
And then it clicked. Oh. She must know. I have IC, and IC is widely regarded by doctors as being among the top 10 most excruciating chronic conditions. It also pushes many patients to disability and even suicide. But it’s not my identity. I never extend a hand and say, “Hi, I’m Kate. I have IC.”
Deciding How to Cope & Controlling What You Can
There was a time when my health was beginning to control my life. Perhaps some of you can relate. I was suicidal. I was struggling at work to get through meetings without excusing myself every 10 minutes to pee. I was going home early and was taking Vicodin to manage the pain. I was doing my homework on filing for disability and giving up the career that was so much a part of my identity. But, ever the student, I kept researching and reading. And rather than finding a way out of the rat-race because of my illness, I found a way to treat and manage my disease so I could get back to doing all the things I love.
Because those of us with certain types of chronic illnesses and disabilities have a choice. I remember the day I looked in the mirror to ask myself “Do I want to be a person with a disease, or am I willing to define myself as a diseased person?” Whoa. And that was the decision that changed my life.
So I cope and I carry on. A few things I’ve found helpful, which might resonate with others dealing with chronic illness, injury or disability:
- I take it one season at a time. Not all of my health problems flare at the same time. So I focus on coping with the crushing headaches and IC flares in the summer, when those are worst, and the jaw pain and Raynaud’s symptoms in the winter. I can’t think about it all. It would be too much to process.
- I never put illness in the driver’s seat. Many sick people are forced to freelance or build home-based businesses because of the limitations of their bodies. But I left the world of cubicles and serial meetings not because my body couldn’t hack it, but because I was a marketing consultant who could be exponentially more successful, impactful and happy running my own business. It was time to put my MBA to work and make the leap. It’s just a silver lining that my health is easier to manage from a home office.
- I work differently, not less. I work more hours than most, I suspect. Seven days a week, multiple “shifts” a day. But I have pain-management regimens and even naps as part of my work day.
- I never complain to anyone, but my husband and my dogs. Who would listen anyway? My health is not my clients’ concern. I’d wager that 90% of them have no idea what I cope with, and I’d like to keep it that way. (As of the writing of this blog, I’m still considering publishing it under a pseudonym for this very reason, but I know that’s cowardly and lacks my typical confidence.) That said, you might not be interested in hiding your health challenges as much as I do, and I applaud you for being as vulnerable as you’re comfortable being.
- When the pain passes, I move on. If I had a curled-up-on-the-floor-whimpering-and-crying kind of IC flare 30 minutes ago, but need to be smiling and in control for a client meeting right now, I’ve got this. I never let a moment of crisis define my entire day.
Being a person with a disease, or a person with pain or a person with a handicap makes you special. It doesn’t make you weak, and it certainly doesn’t need to be your identity. But it is a facet of your reality. So don’t be afraid to develop unique strategies for taking care of yourself, even while you’re busy taking care of your business. You can do both. You are not a sick person.