The Psychology Of Being ‘Out’ With Illness: an interview with Diane Quinn, PhD

CrohnoQuinterviewIn a recent post, we asked “Are you ‘out’ with IBD?” That is: are you open about the illness with the people around you, or do you keep it a secret?

Much of the research behind that post was done by Diane Quinn, PhD, professor of psychology at the University of Connecticut. She was kind enough to let us ask some questions about her work, the challenges of hiding an identity, and tips for ‘coming out’.

Crohnology: Can you give us a general overview of your research?

Portrait of Dianne Quinn, PhDDiane Quinn: For a lot of years, the work on stigmatized identities focused on visible identities — like race and obesity. My work came out of thinking about how people with concealed identities may have different experiences than those with visible identities. Concealable stigmatized identities can include things like substance abuse, mental health, minority sexual orientation — and also physical illness.

C: How are visible and concealable stigmatized identities alike? different?

DQ: In terms of similarities, with both visible and concealable stigmatized identities, we can see the same kinds of harm — at the personal level, there are negative stereotypes, and we see at the group level there are worse outcomes (such as employment outcomes, mental health, etc).

In terms of looking at differences, what’s interesting is that people with concealable identities are managing the information about that identity. People with a concealable stigmatized identity decide who they are going to tell, what they are going to tell; while people with a visible identity have to deal with people already knowing.

There is a little bit of evidence that people with visible stigmatized identities learn better coping strategies, probably from the people around them who share that identity. With visible stigmatized identities, it is easier to find similar others. With concealable identities this can be much more difficult.

One of the key points in my work is anticipated stigma with CSIs — what people with the identity worry about will happen. Do people think others will devalue them, distance from them socially, give them less opportunities in the workplace? Having more of these concerns is bad for mental health; they predict more depression and anxiety. So, to some extent, people with visible and concealable identities have different sets of worries and issues to deal with.

C: Can you talk more about physical illness as a CSI? Some people might not accept the analogy of being sick to being, say, a closeted gay person. Is there a ‘worst’ CSI to have?

DQ: Some identities are more socially stigmatized than others. In our work, mental illness and substance abuse are rated the most negatively by others, whereas concealed physical illnesses are less stigmatized. So, the absolute levels of discrimination experienced by people with different identities is likely different, but the concerns and processes around disclosure and coming out to others are similar.

C: In the case of our physical illness — IBD — what’s stigmatizing is maybe not the prejudices people have about the illness itself, but our inability to talk about the disease and our symptoms openly. There is still a lot of taboo around these sorts of bodily functions. I’ve often though it would easier to be a heroin addict, in terms of talking about my problems.

DQ: Yes – it’s interesting how much things depend on our ability to talk about them. Thirty years ago, it was not acceptable to talk about breast cancer, but that has changed over time. People are lot more comfortable talking about it, perhaps because of the media attention. Obviously, if the physical illness is taboo to talk about, that is going to make disclosure situations more difficult.

C: Is it better to be ‘out’ than ‘in’?

DQ: I don’t usually make that general claim. It’s better to be out if you have some sort of supportive environment around you. I’m working on a study on health outcomes, and the evidence is mixed. There is a small effect of concealment on increased anxiety and depression, but it’s tiny. If you are disclosing to people that are supportive, it is positive to be out. But if you are disclosing in non-supportive relationships or receiving negative reactions from others, the overall effect on psychological health and well-being is negative.

C: Do you have any general advice for a person trying to decide to come out?

DQ: The research shows that people are fairly good at picking their confidants. Usually mothers before fathers, which usually turns out well. If you are going to disclose, start with the person that is closest and most trustworthy, and work your way out from there.

And then maybe ask them: who else is good to talk to? That gives you perspective as to who may or may not be supportive.

One thing from talking to people: when you’re ready to disclose, keep in mind that you have been thinking about it for a long time, while the other person hasn’t. They may find themselves in a conversation they were not ready to have, so do your best to ease into it, giving them time to think and react supportively.

Photo “un brin de toilette(s)” by Flickr user sophie & cie used under Creative Commons license.

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