When illness affects someone we care about it’s hard to know what to say. The subject of illness is rarely a part of social interactions, but given increasing rates of chronic disease in our country, it is useful to think about how we can better support people who may feel emotionally isolated due to chronic health problems.
Although there are no rules for how to talk about illness, there are some things that can be construed as not helpful. If I had put advice about providing support in one sentence, I would say, Be Present and Try Not to Say Offensive Things.
It is never seamless to talk about illness, but those afficted by illness can usually tell when someone is simply nervous and awkward, versus someone whose anxiety spills out of them in a way that disregards the feelings of a patient. One of the main goals is to try to convey that what you are saying really stems from an attempt to help the person you care about and not from trying to get rid of some bad feeling within yourself.
For example, a woman whose friend tells her that she is suffering from chronic pain might change the subject to how she, herself, is suffering with a different kind of ailment. Such changes in subject are often not due to malevolence, but are more often due to anxiety. Changing the subject to one’s own medical problems is one way some people awkwardly try to connect and provide support. It is better to stay on topic and focused on the speaker when someone talks about physical illness.
Other people become overly worried about saying the “right thing.” Sometimes, saying the right thing can become more about our own egos! “Will I be helpful enough? Will I say the wrong thing? How can I make this better?” are all questions we ask ourselves. Avoidance is the wrong approach. People affected by illness need to know you are there. And when someone is grieving the loss of a loved one or are ill themselves, they tend to understand that people may not have the best set of social skills. The important thing is to make contact and let them know that you are thinking of them. If you can, offer to help. But if you offer, make sure you mean it, because some people will take you up on it.
Another important point is to avoid platitudes and superficial statements that try to make sense of an event that often is nonsensical. The number one complaint I have heard from many patients over the years is how distressing it can be when someone says, “Everything happens for a reason.” People who make this kind of statement often believe it to be true in their own life, but it is important to consider whom you are speaking to. Some people do not believe everything happens for a reason and even if they do, this kind of comment does not often provide comfort. Usually people who are trying to talk about illness are looking for some understanding of what their emotions are.
Statements like, “I am so sorry. This is horrible,” are often perceived as more genuine, particularly during the early phases of illness. You can then wait for cues from the other person in terms of how much they want to get into a conversation about what has happened.
Many well-intentioned people say to someone who has a chronic illness or chronic pain, “You don’t look sick.” Unfortunately, this comment falls squarely in the Offensive Things category. Many people who are ill do not appear to be. I think the temptation to make such a comment is because many of us grew up identifying people who were ill by obvious signs: a loss of hair from chemotherapy or a wheelchair. We learned to identify people who were ill in a particular way that no longer applies. The fact that many people who are ill or in pain does not overtly strike us as sick is an example of how the landscape of medicine has changed. For many of today’s observers, illness is not obvious and we have to tolerate some degree of ambiguity regarding not knowing who may be ill.
When it comes to talking about illness, most of us want to be helpful. Managing our own anxiety about sickness, vulnerability and death allows us to provide better support. Many more people close to us struggle with chronic health problems. Though words are not everything, they do matter. Putting some thought into how we talk about health is a worthwhile investment.