For the last five months I’ve been dealing with different types of situations , which are all rooted in what to do if family or close friends aren’t discussing their very significant and potentially life threatening health conditions. Note that this post is not about providers, which was covered in the May post Confidentiality, HIPAA and Getting What You Want.
Have you ever had a friend or family member tell you that they have a very serious health issue, and then add, “but don’t tell anyone?” If so, it may have been incredibly hard to keep that confidence and there might be a time you might find that you can’t.
The most recent situation that prompted this post is one where the person who is very ill, has relayed that they have some health issues, but not provided specifics to family and friends. Other than a spouse and a sibling, no one is aware that this is a life threatening illness the person is dealing with. On the one hand, they are rather blasé about it, but on the other, they are upset that no one is calling or stopping by.
There are lots of reasons people don’t want their health situation discussed, including
• Fear of what people will say and/or how they will react.
• Many don’t want to have to deal with other peoples’ emotional reactions to their situation, and/or their “helpful” suggestions.
• Fear of being discriminated against or being stigmatized, thereby loosing a job, promotion, housing and/or impacting relationships with friends, family and community.
• Not ready to accept the situation themselves, so don’t want reminders by having people ask them about it
• Don’t want to be a burden or have a fuss made over them
• It’s a way to exert control in a situation where the person feels powerless
There is limited research on those that don’t disclose their illness, but indications are that keeping this to your self isn’t such a great idea. Diabetes patients who have a lower propensity to reach out to others have a higher mortality rate than those who feel comfortable seeking support. These are the findings of a five-year study reported by Dr. Paul Ciechanowski, associate professor of psychiatry and behavioral sciences at the University of Washington (UW) and an affiliate investigator at Group Health Research Institute in Seattle. http://www.sciencedaily.com/releases/2010/03/100317132012.htm
In conversing with a friend, who is a minister, they noted the following, in the field of spiritual direction, keeping secrets and not being forthcoming is one sign of unhealth and is very damaging to the journey of the spirit. Interestingly, new research finds that the person having to keep the secret can also be negatively impacted.
In the April Journal of Experimental Psychology, Four studies examined the behavior of people who harbored important secrets, such as secrets concerning infidelity and sexual orientation. People who recalled, were preoccupied with, or suppressed an important secret estimated hills to be steeper, perceived distances to be farther, indicated that physical tasks would require more effort, and were less likely to help others with physical tasks. The more burdensome the secret and the more thought devoted to it, the more perception and action were influenced in a manner similar to carrying physical weight. Thus, as with physical burdens, secrets weigh people down. (PsycINFO Database Record (c) 2012 Scientific American has a very interesting pod cast on this research.
Over the years of working in health care, I have watched how confidentiality has become a very nasty weapon, particularly in the field of HIV/AIDS. It’s been used as an excuse to fire very compassionate and well trained health professionals, as well as pit caring family and friends against one another. More than once, I’ve been in situations where a person has relayed very personal health information with the “don’t tell anyone” caveat only to find months down the road, they had been giving the same information to others in their social orbit. Sadly, in some of these situations, if conversations had taken place among friends, life could have been a lot easier for the person who was ill.
As much as I think people do have real and realistic fears about disclosure, I’ve come to think of it equally as a way to try and have some control over a situation that is beyond one’s ability to manage it. In the early years of the AIDS epidemic, I saw that those infected with the virus who disclosed ultimately did better than those who didn’t. Yes discrimination happened, and it still does, but at the end of the day, it seemed to me that naming it and not keeping it a secret was more empowering. That said, each case is unique and needs to be dealt with accordingly.
Below are things to consider when someone tells you they are very sick but don’t want anyone else to know.
• The fact that they told you means they do want at least one person to know about it. Since a lot of reasons for not disclosing are fear based as well as a need for control, ask questions about why they feel the need for secrecy. Are there ways you can help them with disclosing or better manage their situation? A lot of times they do want others to know but they don’t know how to go about it. Of course, it’s also possible that they do just want one person to know, for whatever reason, but they don’t want it discussed and not even that much with you. If that’s the case, accept it and let it go.
• If they do want help in disclosing, suggest that they check with their conditions specific organization (e.g. American Cancer Society); social worker or case manager where they received their care; or their health provider. Since this is a common problem, there are often handouts and helpful tips which can make the process easier.
• If the person starts off by saying “I have something to tell you, but I don’t want anyone else to know,” definitely ask some questions about the possible content of the secret because if you aren’t sure you can keep the secret, let them know that right up front. It’s okay to say that if the secret involves something that could be harmful to them or someone else, you may not be able to honor the promise.
• If the person just blurts out their problem, following by the, “don’t tell anyone,” be clear with them if you don’t think you can keep the confidence. Remember you aren’t their therapist.
• There are times when you may need to tell someone of the situation. If the person is in danger, such as making suicidal or even homicidal comments; being abused or abusing someone else or jeopardizing the safety of self and others, then relaying information to someone who can help them is appropriate.
• Related posts: How to Respond when you learn that someone is ill or injured.
No comments:
Post a Comment