Impotents Anonymous: Support Group Helps Shed Light on Causes and Cures

More than 70 men--most of them 60 or older and half a dozen of them accompanied by their wives--were crowded into a meeting room of Hoag Memorial Hospital in Newport Beach.

They were listening intently to the group leader--a gray-haired man named Ed--talk matter-of-factly about a subject that most men won’t discuss even with their best friends.

A meeting of the new Orange County chapter of Impotents Anonymous was under way.

“My problem started right around 1970, when I got laid off,” explained Ed, a 64-year-old aerospace systems analyst married 26 years. “We thought it was the stress of being laid off and having five kids and wondering how are we going to feed them.”

But it wasn’t stress that caused the Garden Grove man’s impotence. It was, as he and his wife, Pat, would find out years later, the result of his taking medication for high blood pressure--a common physical cause of impotence.

In Ed’s case, however, not even changing medications eight times helped. Neither did talking to two family physicians, whose comments ranged from, “It’s all in your head” to, “If you don’t use it, you’ll lose it.”

Ed’s impotence, meantime, was taking its toll on his marriage.

“Rather than face failure,” his wife told the group later in the meeting, “I found my husband withdrawing from me--avoiding contact not only in the bedroom, but in all the other rooms of the house as well. It (impotence) affects everything else you do.”

After living with the problem 14 years, Ed consulted a urologist. The doctor told him he was a prime candidate for an inflatable penile prosthesis, a surgical implant that has enabled an estimated 30,000 impotent men to resume normal sexual activity.

After months of indecision, Ed decided to undergo the relatively minor operation, which requires a short hospital stay. “That was a year ago, and I tell you, my whole life has changed. It really has,” he said enthusiastically.

With a smile, Ed’s wife agreed.

“It was the best thing that ever happened to us,” said Pat. “People say, ‘Sex, you can do without it.’ I don’t think that’s true. As you get older, the closeness you feel is more important. And if you lose it, you lose something that’s very special.”

Frank Questions, Answers

With the candid tone of the meeting thus set, Dr. Stephen Auerbach, medical adviser to both the Orange County and Los Angeles County chapters of Impotents Anonymous, and behavioral health therapist Jerry Binder spent the next hour fielding questions from the audience.

- “My name’s Lee. How long would it take an out-of-control diabetic to suffer impotence?”

- “My wife says if I have no desire for her, I don’t love her. Can you tell me that if I don’t have desire for her, I can still love her?”

- “Hi, my name’s Ray. I’d like you to comment on aphrodisiacs.”

So it goes at the monthly chapter meetings of Impotents Anonymous, a nationwide, nonprofit support organization formed in 1982 to give impotent men a chance to talk about their sexual problems, become educated about impotence and learn about the treatments available.

In the process, the men learn they are not alone.

Indeed, Impotents Anonymous estimates that 10 million American men--about one in 10--have chronic impotence, a condition with physical or psychological causes, and one with which most men suffer in silence.

“You can tell your best friend you’re dying of cancer, but who can you tell that you’re impotent?” observed Auerbach, a Newport Beach urologist who specializes in sexual dysfunctions. “You’re hitting at the core of the guy’s manhood. It’s not something most men want to talk about.”

The presence of more than 70 men at a recent meeting of the two-month-old Orange County chapter of Impotents Anonymous, and of an equal number at the first meeting of the Los Angeles chapter, in March, demonstrates the increasing emergence of the once-taboo subject.

(Impotents Anonymous in Orange County meets at 7:30 on the second Monday night of the month at Hoag Memorial Hospital, 301 Newport Blvd., Newport Beach. In Los Angeles, the chapter meets at 7:30 on the second Tuesday night of the month at the Marriott Hotel, 5855 W. Century Blvd. Further information about the meetings, which are free, may be obtained by calling 800-445-7367.)

At the forefront of the effort to bring the subject of impotence out into the open are the founders of Impotents Anonymous, Bruce and Eileen MacKenzie.

Since the couple started the first chapter of Impotents Anonymous in Chevy Chase, Md., in 1982, more than 40 chapters have been formed around the country.

The MacKenzies, whose home serves as the organization’s headquarters, were in Southern California recently to speak to the new Los Angeles chapter and to tape with Auerbach an educational video to be shown at chapter meetings.

‘Not a Whole Man’

“It’s so important to reach these people,” said MacKenzie, 62, a Washington, D.C. businessman, in an interview at Auerbach’s office.

In his case, MacKenzie recalled, “I felt like I was not a whole man. I felt inadequate and had an inferiority complex and low self-esteem. You feel it’s affecting your relationship with people. You lose push, desire. There are times when you seriously wonder if it’s worth going on: You hit bottom.”

The MacKenzies, married seven years, met in Al-Anon, the Alcoholics Anonymous support group for the families of alcoholics. (Both of their now-deceased spouses were members of Alcoholics Anonymous.)

MacKenzie said his impotence developed gradually, and he was impotent when he and Eileen got married. At first, they blamed the problem on the shock of his wife’s death. Eileen MacKenzie said she felt that “a lot of tender loving care would turn it around.” It didn’t.

MacKenzie’s family physician advised him to see a sex counselor, who suggested his impotence might be the result of his diabetes. A urologist confirmed that it was, and in 1981, MacKenzie underwent the penile-implant operation.

Patterned After Al-Anon

It was during his second day in the hospital that MacKenzie called his wife at home with the idea of starting Impotents Anonymous.

“I said, ‘We had so much help in Al-Anon, it’s too bad they don’t have something for impotency. You have no one to turn to; you feel like a freak.’ ”

Although they patterned Impotents Anonymous after Alcoholics Anonymous--they even have I-Anon, a support group for the partners of impotent men--MacKenzie said they go one step further than other “anonymous” groups.

“In virtually all the other anonymous programs--drinking, eating, gambling--there is a compulsion. Here, nobody is impotent because of a compulsion. There’s not a self-cure. You can’t do it alone.”

According to MacKenzie, the organization’s slogan, “We Care That You Get Total Care,” says it all.

“We think everyone with a problem should explore every alternative,” he said. “It used to be, ‘Gee, I wonder if I can overcome this?’ Well, stop wondering. It’s not a question of, ‘Can I or can’t I?’ It’s a question of, ‘Will I or won’t I?’ The ball is in your court.”

Temporary Condition for Some

Auerbach explained that temporary, or so-called situational impotence, due to fatigue, stress, anxiety, anger, drinking or drug abuse, is not uncommon.

“A lot of it is mental at this point, and can be taken care of,” he said. “But the longer the period of time before taking care of the problem, the more difficult it can be to reverse the behavior.”

Although in the past, it was believed that in 90% of all cases, impotence could be attributed to psychological problems, Auerbach said it is now known that about 50% of chronic impotence is caused by physical problems such as diabetes, hormonal imbalance or radical pelvic surgery for cancer of the rectum, prostate or bladder.

The idea behind Impotents Anonymous meetings, Auerbach emphasized, “is not to teach you everything about impotence but to give you some knowledge and provide a place where you can share, a place where people are more at ease.”

As Eileen MacKenzie said, “We want to educate impotent men, to make them feel comfortable with it and discuss those things they’re afraid to discuss: What does it feel like to have an implant, for example, because most of the urologists don’t know. And what is it like for the women?

‘The Human Side’

“It’s that exchange, it’s the very same thing that makes AA work,” added MacKenzie. “We talk about feelings and fears--the human side of the equation.”

MacKenzie noted that the first few minutes of an Impotents Anonymous meeting typically are a bit tense.

“But once the group leader gets up and tells his story, the audience starts nodding and they begin to talk.”

“I was shocked at the first meeting, that they were so candid,” said Gary, 61, interviewed after the recent Orange County chapter meeting.

“If you talk to someone privately, a friend, they probably wouldn’t even want to talk about it,” he said. “But here, when one person hears another person being so candid about it, they are apt to be the same way.”

Gary, who has been impotent the last 10 years of his 29-year marriage, has made up his mind to have an implant.

Gary said his family physician had suggested his impotence was only in his mind, but when he finally went to a urologist, he learned that it was caused by insufficient blood circulation in his penis.

Talked With Others

Before deciding to have the implant, Gary said, he called four former patients who had undergone the procedure.

“And they were all like this gentleman (Ed, the group leader): They said it just changed their lives around. I’m sold on it.”

Gary said that until he attended the first Impotents Anonymous meeting in January, he felt alone with his problem. And he acknowledged that it has caused problems between him and his wife.

“There was a lack of closeness, more of a distance, between us,” he said. “My wife and I have a lot of love for each other, but our relations are platonic, like good friends . . . I sleep on my side of the bed and she sleeps on her side.”

His wife, he said, supports his decision to have the surgery.

“She’s waiting, like I am,” he said. “It’s very frustrating . . . I think about sex constantly.”

But, Gary added, his impotence hasn’t made him feel depressed because “I’m not the cause of it. I just feel like it is something out of my control.”