Table of Contents
Have you ever been so sick that you've stayed in bed for days or weeks? I have. I’ve had Chronic Fatigue Syndrome since I was 19. Despite my health problems, I’ve had a great life. Decades of lessons about managing chronic illness have been tumbling around in my head, so I finally wrote them down. I want everyone who lives with chronic illness to benefit from what I’ve learned! MSI Press will publish my book, Living Well With Chronic Illness, in August, 2015. The book offers a wealth of coping strategies I’ve developed and shared with my social work patients for decades. I hope you read it, and my treasure chest of tips and tools helps you have a great life too.
In this chapter I review several ways people living with chronic illness often orchestrate their lives to give the outward appearance of being fully functional. It discusses the importance of setting priorities and creating balance. Enjoy!
Looks Can Be Deceiving
“Well . . . you look great!” Whenever people announce this when I’m ill, I bristle inside. I’d like to believe the speaker is attempting to be supportive, and what they meant to say is “You may be sick, but at least you’re not looking bad.”
Often these comments feel dismissive, an implication that I can’t possibly be sick because I don’t appear wan and frail. After an entire adulthood of poor health and over twenty-five years of social work, I’ve learned that feeling good and looking good don’t necessarily correlate. Many sick people try hard to look as well as they can when they leave their homes to face the world. Most of us don’t want attention for being sick. We work hard to be seen at our best, not our worst. Looking good is something tangible that makes us feel normal and encourages us as we work to maintain whatever good health we have, or, if we’re fortunate, to return to the healthy lives we once enjoyed.
If someone says you look great when you’re sick, you can respond in a variety of ways. If I think the speaker is well intentioned, I simply reply, “Thank you.” But if I believe the person is being dismissive or doesn’t understand I can be unwell without my illness being visible, I might add something like, “You can’t see a hidden disability.” You’ll have to decide how you want to respond to people’s comments on your appearance when you’re sick. I always try to be polite, and I think of these encounters as opportunities to educate folks who might have little or no understanding of chronic illness.
How We Behave Is Not Always How We Feel
There is a significant difference between the purposeful presentation of a healthy life and a life free of the demands and limitations of illness. Many people with chronic illness seem to be normal. But our presentation in public does not always convey an accurate or complete picture.
We struggle to present our healthiest selves to the world. Most of us don’t want other people to see the down time, the planning required to function, and the moments of desperation, which take place primarily inside our homes.
The better you cope, the less likely others may be to accept that you are genuinely ill. I remember a conversation I once had with a well-intentioned co-worker. Although she knew I had Chronic Fatigue Syndrome and had been sick recently, she commented that I seemed energetic. I told her the reason she believed I had a lot of energy all the time was because she only observed me when I felt energized. I explained to her that when I wasn’t well, I made a point to remain in my office, quietly taking care of business. She didn’t see this side of me at work not because it didn’t exist, but because I went out of my way to conceal it from her and my other colleagues.
I once worked with a woman who had severe rheumatoid arthritis. Despite her condition, she led a busy, active life. She confided in me that people often asked how she could stay so busy, as if they questioned the fact that she had a serious and painful condition. My colleague explained remaining active was how she coped with her arthritis and kept her mind off the pain. Unfortunately, the very aspect of her life that helped her cope with illness also sometimes made people question its existence.