When Your Chronic Illness Forces You to Change Paths

You still press on for a while, resting in the parking lot before entering your building, breathing deeply at your desk before diving into your work, and even taking mini breaks in the bathroom stall, leaning your head into your hands to close your heavy eyelids in privacy. At lunchtime, you sometimes sit in your car and recline the seat to get a 20-minute nap in, just to try to make it through the afternoon.

As hard as you try to continue, using these tricks along the way, your work suffers, your body cries with pain, and your illness thrives, while you shrivel up. You have nothing left to give when you get home and your family deals with the consequences, as you lay in bed or on the couch until it is considered an acceptable time to go to sleep. Finally, the day comes when one of two things happens. Either your boss tells you that your sick time has been overextended, your work is suffering and they have to let you go, or you just can’t keep up the physical and mental load and you have to resign. That pain can ache more than the physical pain. It feels like a failure on your part, when in fact, it is your body that has failed you.

Maybe the rest time in the beginning helps, and you feel grateful for the respite. But loss of identity seeps in over time. It is insidious, and one day you wake up and say, “Who am I?” Often, it is your career that has defined you as a person, and that loss has chipped away at your self-esteem and identity.

As for myself, after my children became old enough, I began making jewelry and selling at local craft fairs and country club events. Up until April of 2018, I was working about two to three days a week. I really enjoying getting out, earning money, and being praised for my artistry. However, I had a very bad flare in the end of May that knocked me down and held me down. I am still physically weak six months later, and had to accept that I no longer can load up a car, set up a display, and stand for several hours — just to pack up to come home at the end of the day. It was a blow to my ego, but reality had set in. I floundered for a few months after that loss, and just brought myself to sell the business two weeks ago.

Luckily, I have kept a blog for the past two years and realized I could continue to write. I am now working on a memoir. I love the work, but unfortunately this doesn’t come for free either. If I write for more than hour, my shoulders get tight, my hands ache, and inevitably a headache sets in from my weakened muscles. So I have to pace myself, even when I am “in the zone.” It is frustrating and makes me angry. I feel cheated sometimes and want to be able to do things I enjoy without consequences.

But for today, I am able to put this message out: find what you love, and see if you can do it. Maybe in small increments of time, smaller bites than you would like. But each one of us, ill or not, has value. We can make an impact on the lives of those we love, as well as strangers. I hope that through your illness you can see that and act on it. Even if it’s just a moment at a time.

What have you had to give up? How did the loss affect you and your family? Have you found something new that gives you identity and pleasure?