Tell Us: How Much Do You Keep Private?

Denise

Tell Us: How Much Do You Keep Private?

Denise
phone-735062_640When we learned about David Bowie's death, we also learned that his family kept his diagnosis and illness private. Very few knew he was ill and dying.

While we're not in the public eye, we also navigate how much to tell about our caree's diagnosis and decline.

I wonder: How do you decide what to tell? How did you disclose your caree's diagnosis to close family members and to friends and to co-workers?

In our comments section, below, tell us how much you share, how you decide when and what to share, and your experiences when you've disclosed details about your caree's diagnosis and declines.

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Amy

I was once told to only share the details with those the closest to me who seem to really want to know. Many times in passing I hear. \"How is Micah today?\" That's when I give my pre-programed response for that day or week. \"Everything is still the same\". Some people (a very select few) seem truly interested. Those are the ones that say. \"Okay now that you've told me what you tell everyone else... How is he really doing?\" That's when I open up more about his illnesses and what's going on in his life. I try to keep the mental illness discussion out of conversations because no one wants to hear about mental illness.

Sharon

Well I wrote a letter explaining my husband's diagnosis gave web site for further information and said call with questions. I said everyone says tell us if there is anything we can do so I added a list of \"anythings\". Since he looks fine I felt an explanation of his rare disease that causes early dementia needs the public's attention and there is nothing to be ashamed of I even have a card to give servers explaining odd behavior.

TiredButDetermined

Great question - this is a difficult decision to make!\r\n\r\nOn one hand, making at least a little of the issue public enables others to provide you with support and assistance...and a little grace, when you are typically an upbeat, on-time and reliable person who suddenly morphs into someone who can be snippy, late and forgetful(!). If I had not told my coworkers, friends and neighbors what was going on with my Dad late last summer, I'm sure they would have thought I had lost my mind (and at times I think I did!).\r\n\r\nOn the other hand, taking it public enables others to suddenly feel compelled to tell you ALL of their own horror stories, worst-case scenarios, unsolicited advice, and why your decisions are all wrong. Ugh.\r\n\r\nSo, I tried to only discuss the \"nitty gritty\" with those closest to me, and kept it more generic with the general masses. There were still some who went overboard, but for me, it was easier to decline help and discard opinions than to maintain the façade that everything was running smoothly.\r\n\r\nWith my situation being that I was dealing with an aging parent, it was a pretty \"accepted\" topic. Most everyone has dealt with my situation in one form or another, or knows that they will have to someday - it's just a part of life. But supporting someone with depression, or chronic illnesses such as Justin mentions (illnesses that are not well-understood or in some cases, accepted) can be very difficult since there can be a layer of judgment and skepticism coming from even the most well-intentioned people. In those cases, I suspect I would tend to be much more private. \r\n\r\nAgain, so thankful we have this community where we can provide support to one another, regardless of the situation!

Michelle

I am interested to hear what everybody has to say on this subject. When I wrote the poem, HE'S ABOUT THE SAME, it was an attempt to work out my own conflicting feelings. I'm still conflicted.

Justin

I tend to not share to much. I'm just generally a more private person. The one exception tends to be with friends and family who have a hard time \"getting\" my wife's chronic illness (fibromyalgia/chronic fatigue). Because she doesn't necessarily \"look sick\" when she is with people, and when she is able to do things with friends and family, these are usually her best days. Because of this, we both have a tendency to emphasize the bad days and rough times and share less of the positive moments to try to give these people a more realistic impression of how our life actually is.