More MS news articles for September 1999

Admit you're ill? Better think

Woman's lawsuit illustrates what can happen when a disease is revealed August 30, 1999

BY PATRICIA ANSTETT
FREE PRESS MEDICAL WRITER

Phyllis Tower wishes she never opened her mouth.

When she was diagnosed in July 1990 with multiple sclerosis, she told her supervisor at the Detroit Police Department, even though she had no symptoms that interfered with her job. She's not one to hide the truth, she said.

The department immediately transferred her from patrol officer to a light-duty detective job, she said.

One afternoon six years later, she received a phone call telling her the department preferred to have officers who could perform any job available, she said. She and some 100 others were out on the street.

She has sued the city claiming discrimination because of her disease, in a case scheduled to be tried in November in Detroit's federal court. City officials declined to comment on the case, because of the pending lawsuit.

"I never missed a day of work," said Tower, now training to be a blackjack dealer at Greektown casino, scheduled to open in November. "I had two years and 10 months to go" to be eligible for a full pension.

In today's tell-it-all world, going public with a medical diagnosis may seem like an easy, inconsequential decision. A generation ago, many medical problems were unmentionables; they still are in some ethnic and religious communities.

But now hardly a month goes by without some new revelation by a celebrity with a medical problem. The latest to come forward is TV talk show host Montel Williams, who last Monday announced he has multiple sclerosis.

Celebrity disclosures often provide a valuable public service by boosting awareness, funds and early diagnosis, medical experts say.

Uncertain territory

For the rest of the world, where stereotypes about disease and disability are common, "coming out" with news of a medical condition is an uncharted course with few guidelines and often much larger consequences.

Tower was placed on involuntary retirement because of her medical disability. The difference between those benefits and the amount she believes she's entitled to receive from her pension, for 23 years of work as a police officer, is about $5,000 a year, she said.

Because her MS has remained in remission, she said, "They never would have found out if I hadn't told them."

Legitimate fears

Art Humphrey, chief executive officer of the Great Lakes Center for Independent Living, a Detroit nonprofit disability resource and advocacy group, said fears about disclosure are legitimate.

"We live in a state where 70 percent of the disabled are unemployed," he said.

Evan Imber-Black, PhD, a New York family therapist and immediate past president of the American Family Therapy Academy, said an era of "reckless telling and arrogant, voyeuristic listening" fostered by talk shows makes people think that telling secrets "no matter how, when or to whom, is morally superior and automatically healing."

She has written "The Secret Life of Families: Making Decisions about Secrets," a unique book addressing an array of disclosure-related issues, from AIDS to incest, marital affairs to terminal illness. It will be issued Sept. 7 by Bantam Trade Paperbacks.

"You need to think through all the possible responses ...to let people know how you feel," she said in a telephone interview.

Families may need group counseling to talk, so a disease doesn't overwhelm the family, she said.

"We have discussions to work toward helping people put illness in its place, so it doesn't overwhelm families," Imber-Black said. She encourages people to carefully pick the time when they'll tell others, not to lie to children about medical problems -- they usually suspect something anyway -- and to consider religious and ethnic beliefs and stigmas about a disease.

Interviews with more than a dozen people who live with the consequences of medical issues, including patients, lawyers, physicians and counselors, show problems associated with disclosure are complex and likely to grow as genetic advances identify medical conditions early in life.

The biggest advantages of telling: Friends offer support. You don't have to suffer or brood in silence. Your employers may adjust your job or your work environment in some helpful way.

The disadvantages: You may be stigmatized or defined by your disease. You may feel a loss of independence, if people try to do tasks you can do yourself. You might be penalized at work.

"I've seen it over and over again," said Michael Pitt, the Royal Oak attorney representing Tower in her fight against the Police Department. "Employees will be doing very well until an employer learns the person has a physical or mental condition, and then the problems begin."

Denial causes problems

Even the suspicion of a health problem can be so wrenching that many people delay getting help or being tested.

"Denial is a strong tool for people to retain their normalcy," said Peter LeWitt, a Southfield neurologist.

Some people devise strategies to hide symptoms, he said, such as using certain phrases to mask failing memories or canes to hide tremors.

Dennis McCarthy of Grosse Pointe Woods said he tried not to hold papers when he gave speeches, so others wouldn't know his hands trembled. He was diagnosed with Parkinson's disease in 1993.

When he did tell others at the direct mail advertising firm where he worked as a marketing executive, their responses couldn't have been better, said McCarthy, a board member of the Michigan Parkinson's Foundation.

Many already suspected he had a problem. He said an assistant helped with so much paperwork that he could concentrate on his sales, which improved. Now retired, he said he has let go of the need to be independent. If he lets people help him, "It makes them feel good," he said.

Nancy Baron of Bloomfield Hills helped start a banking company, but still initially hid her MS diagnosis from colleagues.

"I wasn't ashamed of it," she explained. "I just worried that I wouldn't be able to work the same way, and that I wouldn't get the same reaction to my ideas."

She didn't tell friends either, because "I didn't want to put them in the position of having to keep my secret."

For more than a year, she hid fatigue and eye problems.

"The stress of it all was kind of getting to me," she recalled. When she told her boss, he reacted with support by creating a part-time job for her. Slowly, word spread around the office. Some people said nothing. Others asked questions. With the friends she told, "It was all good and positive. It was like a real weight being lifted."

Virginia Ladd, executive director of the American Autoimmune and Related Disorders Association, a national nonprofit group headquartered in Eastpointe, said that people who don't disclose medical problems sometimes are viewed by their friends as lazy or complainers.

Compassion helps

"They see a person who always seems tired and think, 'They're such a baby,' " she said.

Others may think a person with a halting gait is drunk, an observation that led actress Annette Funicello to disclose her MS diagnosis, according to media reports.

"Disclosure is how you get someone's support, compassion and understanding," said Laura Sacks Kohn, a counselor at Jewish Vocational Services in Southfield and a woman with MS. "My sadness is that when people decide not to disclose, they cut off that opportunity."

And they pay the price, she said.

"They may feel lonely; when a crisis occurs, they have to handle things so totally alone. It may be twice as hard."

Still, Kohn does not favor disclosure at work until a person has been in a job for a while, because they may not get a promotion or may be wrongly denied medical coverage.

Audrey Weinberg of Farmington Hills didn't have the luxury of deciding whether to tell others she had Crohn's disease and colitis.

She was hospitalized for two months in high school with intestinal problems. When she returned to school, she had to obtain permission to leave the classroom quickly if she needed to use the rest room. The diseases can cause diarrhea or urgency to go to the bathroom.

She's now on the board of the Crohn's and Colitis Foundation of America, and is serving as patient advocate of the group's Michigan chapter.

"I've gotten a lot of support in the organization when I wasn't feeling well," she said.

She has kept a letter she received from a woman she had helped get a second opinion from her physician. Notes like these are why she bares her soul and tells occasionally embarrassing stories about herself in public.

"I don't know how to thank you enough for giving me back my life," the letter read.
 

PATRICIA ANSTETT can be reached at 313-222-5021 or anstett@freepress.com.