Be a rock and listen

Since Andrew Marshall's partner fell seriously ill, friends' reactions have left much to be desired: too much 'sympathy' and too little real support can just make the pain worse. Do we need a new etiquette of illness?

"How are you coping?" It's the question I dread the most since my partner fell seriously ill. Before asking, the well-wisher composes his or her face into what they imagine is a caring expression, but I know they have other things on their mind, and children who need picking up in half an hour. How can I even begin to explain the highs of a good day or the despair of a bad one? I certainly cannot package my answer into something that fits the modern five-minute attention span.

When you have to deal with serious illness, emotional sightseers are simply another burden. They walk away imagining they have been helpful, but I am left feeling that they have ripped out my heart and examined it.

Serious illness used to be something that nobody ever talked about. It was a private, family affair. In today's "confessional" culture we have moved to the other extreme: operations are shown on TV and personal pain is now in the public domain. In the past, the terminally ill and their families complained of being ignored; today they often have to deal with intrusive acquaintances who won't shut up. With high-profile patients such Mandy Allwood selling the details of their personal traumas to Sunday newspapers, somehow everybody feels they have a right to know all the details when a friend is ill, and an obligation to "share" in the pain.

We are forever being told that it helps to talk and get feelings off our chests. But when you are dealing with a potentially life-threatening illness the picture is more complicated. Recently I bumped into a friend in the supermarket. She was so sympathetic and supportive that I could feel the emotion building up inside me, and knew that if I did not escape I would be standing by the cold meats counter with the tears streaming down my face. Once the pain inside is tapped, I can easily cry for an hour without stopping.

My friend meant well, but she chose the worst place to talk. Keeping my emotions under control takes up so much energy, energy that I need to support my partner and keep going through a million household tasks. In the end I felt angry rather than grateful for her concern.

"I used to call them ambulance chasers," explains Sue, who was in her late forties when she was diagnosed as having cancer. "One woman whom I hadn't heard from in years phoned me up and wanted to know my prognosis. I just didn't want to discuss it with her, so I put the phone down."

A mawkish interest in all the details can be upsetting, but amateur diagnosis can be even worse. "My partner had been ill for some time," says Guy, a gay man in his thirties. "Of course, I'd been worried that he was HIV positive - but we were looking at all the other alternatives first. I was completely shocked by a business colleague who phoned me about work and then proceeded to ask me bluntly whether I thought my partner had Aids, and how I felt about it. I was shocked that somebody I didn't really know that well could be so forward."

We have no guidelines, no modern illness etiquette, to help us deal with acquaintances, friends or family suffering a serious and potentially terminal illness. Our only yardstick is the tabloid TV talk shows that turn tragedy into entertainment.

"The key to etiquette is putting yourself in the other person's position. Behave as they would wish; that's the cornerstone to a civilised society," explains John Morgan, author of Debrett's New Guide to Etiquette and Modern Manners. In the case of illness, the feelings of the patient should always be our guide; everybody copes with sickness in different ways and therefore has different needs.

"Some visitors felt so uncomfortable about his illness that they could only think of themselves," says Peter, whose partner died of an Aids-related disease. "They had made such a psychological journey to be there, and had such a determination to be happy and smile, that they did not really listen to how my partner felt. If they had, they would have known how to react rather than behave with forced jollity." Everybody is so worried about what to say to somebody who is ill that they forget the importance of listening. "There are no magic formulae, phrases or approaches which are 'the correct thing'," explains Dr Robert Buckman, an oncologist. "The important bit is not what we say - it is how we listen. In some respects, it's the single most important thing that you can do."

John Morgan argues that when applied to serious illness, "manners are very logical. The person who is ill or dying takes precedence, and then, in order, their spouse, the children or parents, close friends, friends, and finally work colleagues and acquaintances." At the deathbed of his partner, Peter wanted the two of them to be left alone: "His buddy and another of his friends were very put out when I asked them to leave, but I felt they were trying to intrude at a very private moment."

It is important for friends to be a rock for the person living with illness, rather than focusing on their own pain. "Keep control of your emotions and avoid hysterical reactions, particularly if you are not very close," advises John Morgan.

"Disease can dramatically alter somebody; it sounds obvious, but do not comment on their appearance," he adds. My partner's mother's comment, "you look dreadful, worse than I expected", has not been forgotten or forgiven.

Overstepping the level of intimacy of a friendship can cause pain. People who are unaware of this tenet have been responsible for most of my and my partner's discomfort. If you have not been close, don't expect illness to make a difference. "I'd not been particularly friendly with my boss," says Patsy, "but he insisted on visiting me, when I was only seeing family. He kept pushing until my husband gave in, and it felt most uncomfortable."

Similarly, Peter's partner had to endure awkward visits from work colleagues or friends on the periphery of his circle. "He loved to receive cards and letters and that would have been much nicer," explains Peter. "People would also turn up unannounced; before he was ill they would never have just dropped in without phoning."

On the other hand, when close friends fail to offer the level of support that is expected, it often feels like rejection. "My two dearest friends were dreadful when I was ill," says Sue. "I felt completely let down, because they were like family to me. They did not make one appearance at the hospital, although I was there for eight days. When I was home they were three hours late visiting, and I had made an incredible effort to get up and look presentable. I phoned them and told them not to bother."

And if you have been used to hugging your sick friend, the advice is not to hang back because they look frail, or because you feel queasy about it. "My partner was always upset that people wouldn't touch him," says Peter. "He felt terrible enough about how he looked, without them adding to it."

People who are very sick find others exhausting; visits both in hospital or at home are best kept to a 20-minute maximum. Unfortunately, my partner was always too polite to ask somebody to leave. Many visitors want to bring a gift, but do not know what to buy. Flowers can certainly cheer up a room but too many have unfortunate associations. An alternative is cosmetics or fancy foods; and talking books and music are always appreciated. My partner and I found music the best ways of communicating feelings that were too intense to put into words.

The families of ill people also need help. Friends often say, "let me know if there's anything I can do"; it is much better to offer something specific and practical - looking after the kids or shopping for birthday presents - rather than expecting the stressed-out carer to be able to identify what they need. Sometimes I feel that there is no escape from sickness and disease; friends could help by taking me out somewhere and taking my mind off it. When it comes to dealing with my pain I have chosen to talk to a counsellor who not only listens but helps make sense of what is happening - a skill that few friends possess.

Our need for modern illness manners is greater than ever before; it is the only way to build a bridge between the sick (and their partners) and relatives and friends who generally want to be supportive. But I can feel a barrier developing between myself and the rest of the world because it is so difficult to deal with illness in a society where everybody wants to live for ever. I need my friends more than ever before, but how do I reach out to them?n