When Amy was diagnosed with a chronic illness 10 years ago, her life became a terrible syndrome of Catch-22. The more she tried to be OK, the less OK she became, and then the harder she'd try to be OK.

When her family would finally get to take a vacation, Amy (who did not want her real name used) would spend the whole week sick in the hotel room while her family went out. If she went to her son's hockey game and sat in the bleachers in the cold air for a few hours, it would take her days to recover.

"I became determined to stay in the workplace, to maintain my full-time job, but I'd come home and go to bed. I couldn't help my kids with their homework. I had to recuperate,'' says Amy, a health care professional in Albany in her early 40s who is married and has two children. "I'm constantly learning what I can't do anymore and it's sad because it's the things I used to do without any problem.''

Amy has fibromyalgia, a chronic illness characterized by pain in muscles, tendons and joints, especially along the spine, and she was recently diagnosed with chronic fatigue syndrome as well.

She is one of millions of people who struggle to balance life with a chronic illness. Tonight, a free seminar at St. Peter's Hospital, called "Sleep, Fatigue and Chronic Illness,'' focuses on the issues of living with a debilitating ongoing disease.

Nearly half of the American population suffers from a chronic illness — fibromyalgia, CFS, diabetes, multiple sclerosis, lupus, rheumatoid arthritis and others — according to a recent report in the Journal of American Medicine. And that percentage is growing fast, especially with the aging baby boomer population, say experts.

"It is now leaning toward probably, not just possibly, that you or the person next to you will have a chronic illness,'' says Patricia Fennell, president and CEO of Albany Health Management and a counseling social worker. "We need to have skills that prepare us for living with chronic illnesses. But we have a serious medical and cultural lag — no training — we are not prepared.''

No one knows this better than filmmaker Kim Snyder. In 1995, Snyder landed a breakthrough job — working as an assistant producer on a Jodie Foster film. She contracted CFS in the middle of the project, although she didn't get that diagnosis until more than a year later. She didn't want to quit, but she was losing control of her body.

"It was devastating, a total nightmare. I was in agony, staggering around, hiding under a desk during lunch time just so I could lay down. I couldn't walk three blocks or climb a flight of stairs,'' Snyder says. "I was trying so hard to perform and keep up and I didn't know what was happening to me. It was terrifying.''

Snyder collapsed on the set, ended up in the hospital and was soon completely bedridden. She says the disorientation and diminishment of her senses made her feel like she was behind a wall of water, unable to move, unable to communicate. Yet she found a way.

For the next five years, Snyder battled CFS while investigating, directing and producing a documentary about the disease called "I Remember Me.'' Fennell served as the primary clinical consultant for the project.

In her award-winning film, Snyder takes up the mantle for the more than 800,000 people in the U.S. who are afflicted with CFS. She weaves her own exploration with the stories of other people dealing with CFS, including U.S. women's soccer star and Olympic gold medalist, Michelle Akers, filmmaker Blake Edwards and a high school senior who is determined to attend his graduation even though he's spent the past two years on his back in bed. The documentary is set to the evocative music of jazz musician Keith Jarrett, who was also sidelined by the illness for four years.

"It's ultimately a film about loss, perseverance and creating meaning out of adversity,'' says Snyder, who is now much improved and functioning fairly well with her CFS. "And it's about all chronic illnesses, because there is a mourning and sadness about the losses you endure that doesn't go away, and you're reminded with physical symptoms all the time.''

Snyder's film will be screened tonight as part of the seminar at St. Peter's Hospital. The event will also feature a multidisciplinary panel of experts, led by Fennell, speaking about chronic illness. Fennell will discuss coping strategies presented in her most recent book, The Chronic Illness Workbook (Albany Health Publishing, $20).

"The important thing for people with a chronic illness is to learn to cope for the long-term with a problem that cannot be remedied,'' says Fennell. ``They must learn to navigate the physical, psychological and social aspects of the illness — and this is often ignored by traditional treatments.''

In fact, most people say the most difficult aspect of having a chronic illness is being disregarded by medical professionals and shunned by society.

During her research, Snyder was told by investigators from the Centers for Disease Control that CFS was psychosomatic or misdiagnosed. Snyder reminds her film audience that until the 1950s, multiple sclerosis was also considered a "hysterical condition.''

"There's been discredit of my illness from the medical community and from friends. There's strong disbelief unless it can be measured scientifically,'' says Fay Marks, a physicist, who lives in Halfmoon. Marks used to work researching noninvasive methods of breast cancer detection until she left her job four years ago. She was diagnosed in 1993 with myalgic encephalomyelitis, many people's preferred term for CFS.

"I've felt like a pariah at times, truly wounded from misunderstanding. People need validation. Without it, everything goes awry. There is trauma and hurt if validation doesn't occur,'' Marks says.

Our culture often marginalizes the chronically ill and people's attitudes can aggravate the difficulty of living with a chronic illness, according to Fennell. "Chronic illness means cycles of relapse and recovery. It's very hard to stabilize. It's like the old joke says, 'The good news is that you're not going to die — and the bad news is that you're not going to die,' '' says Fennel. "There are skills for living with chronic illness and thriving despite it. You can move through the phases so that life is not all about the disease but the disease is just part of your life.''

© May 2, 2002
Copyright 2002 by Times Union, Albany, NY

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