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.
Living With Disability: How To Create Balance
My life is a constant balancing act of trying to nourish my mind, body, and soul, holding down a full time job, and maintaining numerous relationships with friends, family, and romantic partners. I realize the balancing act I strive for isn’t just a challenge for people living with chronic illness; it is the hue and cry of every working woman I know.
However, living with chronic illness increases those challenges. Sometimes my body’s needs require so much stamina, my whole ecosystem is thrown off balance. Since my relapse in 1996, illness has forced me to re-evaluate constantly how I conduct my daily life in ways I never had to previously. I’m always trying to get the balance of needs in better sync. This is a lofty goal because, while my intellectual, emotional, and spiritual needs remain fairly constant, my physical needs often vary greatly from day to day, and even from hour to hour. I’ve learned to live with a tremendous amount of unpredictability. I accept this unpredictability as normal for me, and it no longer causes me despair as it once did.
My patients have also told me that sometimes the adage “one day at a time” can be too much to handle. I advise them to break an overwhelming day into segments. I encourage them to focus on the next meal, for example. Or if they’re really having a tough time, I help them focus on the next hour. When life’s an adventure because of physical or mental illness, we can break up the day into manageable blocks of time. This philosophy helps me survive my bad days, and my patients respond positively to the concept.
You will want to learn, over time, how to create your own balance and to make peace with it on your own terms. It’s achievable, and you can learn to be happy living within its parameters once you’ve adjusted to the demands of your illness.
Spend Some Money!
In addition to advice about guilt, my mother also said, “There’s no problem so big it won’t get at least a little better if you throw some money at it.” I have found this to be true over and over again. I know money is in short supply for many who live with illness. Often people are on fixed incomes that severely limit their financial flexibility. I understand throwing money at a problem is not possible for everyone. But when it’s an option, it’s worth considering.
In the late 1990’s, I had an episode of extreme fatigue combined with severe sinus problems. I was home for two weeks, the end of which was usually the point in time when I became desperate and frantic. Medical science was doing nothing to help me. My father told me he’d heard acupuncture could be an effective treatment for sinus problems and suggested I see an acupuncturist. Unfortunately, I didn’t think I had the extra cash for out-of-pocket care until I remembered the “Zoe goes to college fund.”
Meeting Your Needs: How To Prioritize
Years before, when I first adopted my cat, Zoe, I’d tried unsuccessfully to buy health insurance for her. Instead, I began to save twenty-five dollars a month for Zoe’s health care. I jokingly called my cache the “Zoe Goes to College Fund.” When Zoe’s college” fund reached a thousand dollars, I stopped contributing.
That fall, I decided to spend the money I’d saved for Zoe. She was perfectly healthy, whereas I was desperate and sick. It was an easy decision. I took my father’s suggestion and saw an acupuncturist the first day I felt well enough to leave the house. I continued appointments with him for a couple of months. I had no idea whether or not his treatments were helping me, but I found them surprisingly relaxing, which kept me returning. I stopped seeing the acupuncturist when Zoe’s fund reached two hundred dollars. I’d moved out of the worst of the relapse by then.
I spent Zoe’s college fund because I needed help right away. Zoe was less than ten years old when I dipped into her savings, so I had plenty of time to rebuild her medical fund. Throwing some money at my problem helped me physically and made me feel more empowered because I was being proactive. Mom would have been proud.
Learn to Prioritize
It’s important to prioritize how you expend energy when illness limits it. I have a motto: Movies First. If I had a family, my motto would be Family First. I love movies and prefer to see them in a movie theater. I’ve gone to the movies at least once a week for forty years. Among my friends and family, I’m often known as the person who “sees everything.”
I stagger into the theater at 10:40 for the 10:45 show, along with other film fanatics. But when I go to the movies on Saturday morning, I know whatever else happens during the weekend, I’ve made time for the part of my life I care about the most. Sometimes my home isn’t as clean as it needs to be, and then I can look forward to watching the dust bunnies drift across my floor. But because my health is so unpredictable, it’s essential to prioritize my activities. Monday through Friday, my priority is work. On the weekend, it’s getting to the movies.
Often it isn’t possible for me to do everything I need to in order to keep my life on track the way I want. I have to let go of certain things. Prioritize what you care about most, and give those matters your time and energy first.
Let go of what is less important to you. Eventually the less important things get done anyway. I pay my bills, and, sooner or later, I clean the house. When I look at the big picture, everything works out, and it can work for you too.
As the ringmaster, I plan well, balance the components of my life carefully, and remain optimistic. These are the best ways I’ve successfully managed a complex life with chronic illness.