People with chronic illnesses "have to figure out how to function in the family, get to work, and maintain a social life - and those around them have to figure out how to respond," writes Joanne Kabak. Her article, first published for the holidays in 2004,* provides some good advice from patients and professionals.
Finding the Strength to Be Sociable
By Joanne Kabak
For more than three decades, JoAnn Quinn, 55, of Bellmore has lived with lupus, which is characterized by overwhelming fatigue and extreme joint pain.
She doesn't let it keep her from a social life, including having a holiday with all the frills. But at every step of the way, she has to work things out to accommodate her illness. That means leaving the decorations to her husband, serving food that's cooked in advance, and being satisfied with a house that isn't always sparkling.
Sometimes, it also means having a thick skin. Quinn said she's had to brush off glares of passersby at the mall who think she doesn't look sick enough to use handicapped parking. Even harder to deal with is losing friends because, one time too many, she's had to cancel plans at the last minute. "Some people take it personally," Quinn said.
Those who suffer with chronic illnesses may look healthy and have periods when their symptoms barely make a dent in the day's activities. But other times, symptoms flare up without warning. Further, many people have more than one of the approximately 80 disorders identified as chronic, including arthritis, chronic fatigue, diabetes, fibromyalgia, lupus and multiple sclerosis.
In addition to getting appropriate medical treatment, patients have to figure out how to function in the family, get to work and maintain a social life. And those around them have to figure out how to respond.
When it comes to chronic rheumatic illnesses, specialist Dr. Alan Kaell, who practices in Port Jefferson and Smithtown, said, "I only wish I had a magic pill that's risk-free and would cure everyone." But these types of disorders do not go into complete remission with medication, although they're helped significantly.
"Medicine alone," Kaell said, "is necessary but not sufficient for people to live quality productive lives, whether it's recreationally, vocationally, spiritually, socially."
To get more of their life back requires socializing and coping skills. "You don't give up going out with people, but you may have to give up dancing because your knees and your back can't take it," he said. As tough as it is, people with chronic illnesses have to renegotiate with themselves, and those around them, to develop more realistic expectations.
Holidays 'A Lightning Rod'
Despite the need, "there's no model for how to deal with chronic illness in social terms," said Patricia Fennell, a researcher and clinician specializing in chronic illness. She's also the head of the Albany Health Management Association in Latham, N.Y., an organization that counsels patients and trains professionals. The issues surface particularly this time of year, since "holidays act like a lightning rod where all the physical and social concerns around chronic illness get really highlighted."
Without a new way of looking at things, people feel they have to keep up the traditions, often by fulfilling expectations that may be "crushing and oppressive," said Joan Broderick, assistant professor of psychiatry and behavioral science at Stony Brook University.
For a person with a chronic illness, standing for a couple of hours at the kitchen counter to make butter cookies the way Grandma did may seem out of the question after a day's work. But how to say no when everyone in the family believes the holidays aren't complete without them? Invitations, too, become more of a dilemma than a chance to have fun. When there are three parties in the next five days - the boss' annual event, the child's school pageant, the mother-in-law's tree-trimming - a person with chronic illness may barely make it through one of them.
Chronic illness is ambiguous, cyclical and long-term, said Fennell, who has identified four phases based on extensive research: crisis, stabilization, resolution and integration. For example, people have different physical and social experiences in the first phase than they do after they've stabilized. Yet, in many cases, people also end up looping back and forth between the phases.
For Kim Snyder, an East Hampton filmmaker who has chronic fatigue syndrome, the crisis hit 10 years ago in her early 30s. During the first 18 months of her illness, she said, "I had no social life." Her contemporaries were on the career and social fast track, and she was housebound and bedridden.
"I felt like I had a horrible flu every single day. I felt gypped socially, professionally," Snyder said. What's more, "there was nothing in my experience to help me understand what to expect."
Adjusting Your Routine
The way Gina Cifuentes, 33, of Bay Shore, initially handled her diagnosis of rheumatoid arthritis and multiple sclerosis was to be rebellious. "I didn't want to see anyone," she said. But now that three years have passed, she's resumed a social life that centers on her family, including three younger sisters. They keep her laughing, she said, though otherwise her social activities "are not very loud." Former routines, like the once-a-week night out at the bar with her sister and friends, are just not an option.
"Chronic illness forces you to re-adjust a lot. And I mean a lot," said Anne Raybin, 78, who became ill with fibromyalgia in 1968, long before it was even given a name. She can't play tennis or golf anymore, but, she said, "I don't give up on joy." For her that especially means continuing to teach at Stony Brook University beyond her retirement as a social science professor.
Sometimes the questions center not so much on what to do, but what to say. Raybin said she's open with her students about her illness, but she doesn't see a need to go into the details. For example, when she had such severe back pain that she walked into her classroom stooped over and had to have a teaching assistant carry her papers, the students wanted to know what was going on. Rather than identify the disc problems that accompany her illness, she said, "I made a joke about aging."
In her job in retail sales, Cifuentes said she's able to stand for long hours, but lifting heavy objects is a problem. If she has to, she said, now she'll speak up, "so people know what they're dealing with when they're dealing with me."
Be clear about limitations - what you can do, what you can't do, and what you won't do, said Broderick. But it takes practice. "There's a lot of dysfunctional communication around chronic illness," she said.
Avoid Suffering in Silence
Especially during the holidays, chronically ill people need to cut through the silence and express what really is meaningful to them about the celebrations, and what has to go. It beats plowing ahead stoically - only to have your head fall onto the plate in exhaustion as soon as the special dinner you prepared is served.
For example, Raybin said she's gotten her family to accept the fact that, though she loves to cook, she makes her homemade potato latkes for Hanukkah in advance when she has the energy and freezes them. After initial skepticism, everyone now says they're just as good.
Cifuentes said she could leave all the holiday preparations to her family, but she wants to have her own contribution, too. This year, it's pineapple upside down cake: easy to bake and delicious.
Snyder, the director and producer of an award-winning 2001 documentary on chronic fatigue called "I Remember Me," said that now that her symptoms have abated, she's working long hours again and hosting a dinner. But she plans to ask for a lot of help, and she expects to get it. What tends to happen, she said, is that you "recruit" people into your life who are more nurturing and understanding of what you're going through. The friends who don't get it? They seem to fade away.
Sexuality Versus Intimacy
For many people, the holidays, like the rest of the year, are not just about public festivities, but also about private moments.
"No one with a chronic illness walks into my office saying 'We're having too much sex,'" said Fennell. Typically, "the spouse wants to know 'When am I going to get my wife back?' "
Symptoms such as pain and fatigue dampen the sex drive, and so do the side effects from medications. Antidepressants may suppress libido, and steroids can cause significant weight gain. It can help a relationship to shift the focus to a different kind of intimacy.
Quinn, who is the executive director of the Long Island/Queens affiliate of the Lupus Alliance of America, said its education days include discussions on warm baths, massages and other ways to accommodate the illness in intimate situations.
It can even help to change the time of day you are together. For many people, Broderick said, sex at night is out of the question, because a chronically ill person can be totally exhausted by early evening. Mornings may also be a problem since some conditions cause a person to wake up very stiff and achy. So why not try three o'clock in the afternoon?
Even though there are medical changes that aren't within the control of the person, "virtually any problem that a person with a chronic illness faces can either be overcome or more successfully coped with. Sexuality, intimacy is one of them," said Robert H. Phillips of the Center for Coping in Hicksville and the author of 30 books on coping.
In the end, "all we want to do is feel normal," said Paula Goldstein, 59, who has lupus and is a social worker from Mineola. However, no matter how much people try to make life hum along, there still are times when the effects of the illness stop them in their tracks.
Goldstein describes herself as a positive person, but she was anything but positive the day she had to miss her daughter's induction into Phi Beta Kappa at Union College in Schenectady because she was too ill to lift her head off the pillow. "I cried a lot," she said.
Yet, those times are the exceptions. Like most people with chronic illness, she recognizes that "I can't do what I used to." But Goldstein added, "I do what I can."
Party Tips for Sufferers
Patricia Fennell is the author of The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life, and a behavioral consultant to the U.S. Centers for Disease Control and Prevention on chronic health care guidelines. Given the epidemic proportions of chronic illness, she said, if you're having a holiday gathering, it's very likely there'll be someone at the party who is living with one of the disorders. There are gracious ways to raise the concerns. Her suggestions:
For the Host
How to say it: "I know you've been coping with an illness. I'd love to have you come. Is there anything I can do to make your visit more comfortable?"
Food: You don't need to make a whole separate dinner for guests who are ill, but you can ask if there's a particular food or two to have on hand in case there are dietary restrictions that would make them unable to eat anything you'd normally serve.
Physical comfort: Standing for a long period of time is often difficult. Offer seating, or an opportunity to lie down in another part of the house.
Personal needs: Someone with a chronic illness needs to know where the bathroom is and how far it is to get there.
For the Guest
It's up to you to decide how much you want to disclose about your condition. But it's only fair to share enough information so your host knows your parameters if they affect your experience at the gathering. And it builds in a cushion in case you're having a bad day.
Accepting the invitation: Let the host know "I won't be able stay too long," so if you have to leave early, you don't create hard feelings or get into an unnecessary exchange where the host tries to persuade you to stay. It also helps to say, "Given my limitations, I may not be able to make it at all."
Warning the host lifts the pressure off you. If it turns out you're really not well enough to attend, even if it's at the last minute, you'll be less likely to force yourself to go. Pain and fatigue is enough to endure. You don't need to pile guilt and disappointment on top of it.
Source: Reproduced with kind permission of Newsday.com. (c) Newsday.com, all rights reserved. Orginally published December 2004.