Tuesday, Feb. 6, Noon ET

Dealing with a Diagnosis

Jessie Gruman
Author of "AfterShock: What to Do When the Doctor Gives You -- or Someone You Love -- a Devastating Diagnosis"
Tuesday, February 6, 2007; 12:00 PM

What to do when the doctor gives you -- or someone you love -- a devastating diagnosis? Jessie Gruman, founder of the Center for the Advancement of Health, will be online to discuss her new book, "AfterShock," excerpted in Tuesday's Health section.

Gruman was online Tuesday, Feb. 6 at noon ET.

A transcript follows.

Jessie Gruman: Hello -- Jessie Gruman here, looking forward to talking with you today about some of the tough topics that come up when you -- or someone you love -- gets a devastating diagnosis.

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Silver Spring, Md.: I've found the combination of "monitor" behaviors and managed care coverage to be a fearful situation. You have very little opportunity to shop for coverage and treatment, yet your coping style demands that you have full knowledge of the alternatives. What are your tips for coping with this -- apart from waiting for open season, which isn't always an option!

Jessie Gruman: What an interesting comment! I hadn't thought of this, but of course, you are right.
One of the things that helps some monitors is learning over time to "titrate" their search for information -- that is, to control the amount of new information that take in, or to time it around the events where they know they will need it.
Monitoring is a very good way to manage your anxiety -- until it becomes an additional source. See if you can give yourself some limits and stick to them.
Good luck!

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New York, N.Y.: I am 95 percent sure that my doctor is going to give me a diagnosis of multiple sclerosis at my appointment on Thursday.

I have been volunteering with the MS Society for years so have lots of info and have friends with MS and have access to recommendations of good doctors.

I know it isn't a death sentence but how do I keep myself together and move forward? When and how did you tell family or work about your diagnosis?

Thank you.

Jessie Gruman: That's a big diagnosis, no matter how familiar you are with it. And it takes time to absorb what it means for you now and in the future. The moment you get the diagnosis is really just the next step in this process of learning about what is wrong with you, and while it may feel momentous, there is no reason that you must make a momentous announcement about it to everyone you know.
This is a very personal piece of information you are thinking about sharing and it sounds like you have the time to consider how and to whom you want to talk to about it now -- and who you might tell six months or a year from now.
So take your time; give it some thought. Don't feel rushed into telling anyone.
My own experience was different each time I received a bad diagnosis -- it was related to my age, my maturity, the kind of disease, how advanced it was and so on. There is no right way to do this -- only the way that is right for you.
Some of the good MS Web sites have very thoughtful information about telling people at work about your diagnosis.
There is also a whole chapter in "AfterShock" about telling and involving others -- there are a lot of diverse perspectives in there, as well.
I wish you the best. Jessie

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Washington, D.C.: One thing that surprised me after my cancer diagnosis -- perhaps it should not have -- was the way others reacted.

Some of course were supportive but there were also many who (1) asked a lot of intrusive questions like they were getting entertainment value out of my cancer, questions that were frankly painful, (2) or asked a lot of questions to establish that they were safe (while I clearly was not), to determine why I got it (family history? diet?).

How to handle?

Jessie Gruman: Jeepers -- you are sure right about this! I interviewed over 200 people who had received devastating diagnoses for my book and every one of them mentioned this. I collected the main types of comments people made and commented on them in the chapter on involving others (Chapter 3).
While my own responses to people's intrusive questions have not always been, ummm, polite, I do try to remind myself that they are asking -- and commenting -- out of a deep concern for me, that are trying to show their support, and that they are really uncomfortable about my pain. I don't always remember this at the spur of the moment, but I sure try to.
Perhaps you'll do better.
Jessie

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Northern Virginia: I was diagnosed with a condition which all the descriptions use words like "incurable, ultimately fatal, rare." Yet I look just fine. I am being treated successfully, so I'm buying some time, but my acquaintances and co-workers don't think I'm sick, because "you don't look sick." How can I make them understand that I have some very hard days, some very uncertain times, and need some help from time to time?

Jessie Gruman: This is a tough situation, because I'm sure that most of the time, you don't want to be treated as someone who needs special accommodations or who is still really ill, even though sometimes you do and are.
I think probably this is a discussion that needs to take place one-on-one with each person from whom you need understanding. This is hard, in part, because neither you nor the other person probably really want to remember how ill you might still be.
Talking about this mixed blessing of being alive and looking fine, despite your bad prognosis, while you are sometimes quite ill -- and asking them to understand and work with you on this will be a different conversation with your supervisor than it will be with a close co-worker. Use your judgment. You know your workplace; you know your colleagues.
There is a chapter in "AfterShock" about work relationships -- you probably could write one yourself after all this time -- but it does spend a little time talking about this situation, particularly at the beginning of an illness.
Good luck!

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Washington, D.C.: I recently received a serious diagnosis (I wouldn't call it devastating, but it's definitely very serious) and I'm finding it really awkward to talk to anyone about it other than my doctor and my closest family members. I feel awkward telling friends and my in-laws, and I feel awkward not telling them.

Any thoughts or advice on this?

Jessie Gruman: There is no reason at all for you to tell anyone else about your illness. This is deeply personal, private information and you should follow your instincts about whom to tell and when.
In interviewing people for "AfterShock," I found that some people told everyone under the sun -- the guy behind them in the movie line, the people waiting for the red light with them, whomever was around, while others were very circumspect and told only their spouse or only their spouse and children. They made these decisions for different reasons -- some because they were concerned about their jobs, some because they wanted sympathy from any quarter, some because they didn't want their friends to see them as weak, whatever.
The only consideration you may want to figure into your decisions over time is whether you may be cutting off support from close friends or family that could be helpful to you.
Otherwise, I encourage you to handle this the way you feel most comfortable.
Best wishes -- Jessie

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Silver Spring, Md.: I think the biggest thing is that people don't wanna die in an ICU hooked up to a bunch of tubes.

I am also concerned about things like pneumonia that can kill elderly people. The horror stories on this chat a week or so ago by the doctor who wrote a book on dying were terribly troubling.

Jessie Gruman: I think you are right that people are concerned about the end of their lives -- though at the point when people get a really bad diagnosis, they are often more preoccupied with what is going to happen between that day and the end of their lives.
Don't you think it is interesting that, despite the fact that many people like you and me don't want to die in the way you describe, we still struggle to take those few critical steps we can that can help us avoid it? You know -- completing advance directives, medical powers of attorney, living wills, will, etc.
Have you done yours? I've done mine, but should probably revisit.
Thanks for the reminder.
Jessie

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Austin, Tex.: Great article, but what about those that have no money or insurance to receive a diagnosis until it is too late?

Jessie Gruman: Yes indeed. I wish I had an answer for this one!
This is an issue for all voters to ask candidates about.

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Washington, D.C.: So, my husband and I have started infertility testing and we're trying to prepare ourselves for what could eventually be a diagnosis that we won't be able to bear children. Part of me feels calm and rational -- this happens, life won't end -- and the other part feels like I'm in denial.

Jessie Gruman: You know that phrase "don't jump off that bridge until you come to it"?
Sometimes we convince ourselves that by anticipating pain or loss, we can somehow make it less when the real thing comes. In my experience, that doesn't work really well and is not a good use of my time (though it doesn't stop me from trying this occasionally).
We each experience loss in different ways -- the meaning of each loss reverberates in ways that are deeply personal and which change in meaning over time. It is rare that any of us can absorb the enormity of a serious diagnosis or the news of infertility or the death of a loved one in one moment.
Rather, we take in what we can when we hear the news and then take the next step forward into a new reality that offers different challenges, different opportunities and different ways of finding meaning in our lives.
I wish you the best.

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Washington, D.C.: I find your answers really insightful and helpful and I have started reading your book. What is the best way to break the news about a serious illness to relatives who are abroad and have no control over your situation? Is it best to tell them as soon as the diagnosis has been given to you, or is it better to wait so you can give them more details about the treatment and chances to soften the blow.

Jessie Gruman: I think you have got the right idea there -- particularly if they are close to you and would want to be very involved with you right now, it is probably a good idea to gather enough information so that they are not waiting out there -- even more helpless than you are -- to find some resolution about how to respond to your diagnosis.
However, if they are people from whom you really need support right now, tell them. This is not a time when their needs necessarily come before yours.
Best wishes,
Jessie

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D.C.: Thanks for talking with us about such a grim topic. My parent has terminal cancer, but we recently received some "good" news that there had been some shrinkage of the tumor, thereby giving us more time. I struggle with fully rejoicing in this news, as it is still terminal. Am I being selfish?

Jessie Gruman: Rejoice!
Today is all we've got.

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Arlington, Va.: My soon-to-be-fiancee's father was diagnosed with lung cancer in December and started his chemo/radiation treatments last week. While the outlook is good (they should be able to treat his tumor without surgery and he should recover), I'm concerned about what my role should be in helping him cope with regards to the family. He's in another city so I go with my girlfriend about once a month to see him, so how do I go about helping everyone through this while still keeping my own self together? Thanks!

Jessie Gruman: This is a very thoughtful question. It is a delicate thing to be an in-law (or soon-to-be in-law) in a family in crisis. Families respond so differently to outsiders! Sometimes they are leaned on as the voice of reason just by virtue of the fact that they are not inside the family and other times they are completely frozen out or discounted. And all responses in between.
In general, I think the approach of the helper should start with the idea that your aim is to support the autonomy, dignity and privacy of the person who is ill. Do not presume anything. Ask what he needs that you can help with. Make clear, concrete offers of help that he can say yes or no to. Don't be offended when he refuses an offer or doesn't respond.
In terms of keeping yourself together -- make sure you don't make an offer you can't deliver on.
Good luck! Jessie

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Anonymous: How do you keep fighting to get a diagnosis? I know that something isn't right -- yet doctor's say because most of my tests show up okay, it's nothing. However, in my research into the two things that are most likely candidates, both say that it's hard to come up "positive" on any tests...most cases are diagnosed when you have some huge trauma event. I'm getting so frustrated and depressed that I want to give up yet I want to know what's going on to fix it. HELP

Jessie Gruman: This is a more common complaint than either of us realizes. And there is no quick fix for it. You sound like you are vigilant and a good observer of your symptoms. Hopefully your track changes over time. That is definitely in your favor.
I wish you the best in finding some answers.
Jessie

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New York, N.Y.: Have doctors expressed an interest in getting your book into the hands of patients to help them deal with a diagnosis that's really upsetting?

Jessie Gruman: Yes -- some doctors, some social worker and some nurses have expressed interest in the book.
I think "AfterShock" offers a good extension of the information that professionals offer in their limited time with us as patients / clients.

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Connecticut: Interesting article. Two questions/comments.

We moved to Connecticut from D.C. about four years ago. Shortly after we arrived both my husband and I (previously healthy) got very sick. Neither was life threatening, but we did not know that with his for over a year. Both of us had to stop most activity, including most work.

I found it very frustrating that we typically had to wait 4-6 weeks to get doctor's appointments (with specialists). So -- the idea of waiting a week to get a second opinion doesn't sound possible. In fact, it made us want to pursue multiple courses of possibilities at the same time. Any thoughts?

We were starting to wonder if we should go back to D.C. to find doctors. So I latched on to your comment about the different care options in D.C. vs. Connecticut. Did you highlight Connecticut for a reason?

Thanks.

Jessie Gruman: Getting appointments with specialists can be tough -- and it is very frustrating to have to wait for some kind of resolution.
Pursuing multiple strategies (by that, I assume you mean making appointments with a variety of specialists) is a reasonable course of action, although, of course, you want to be certain that all specialists have good experience treating your condition and that you don't take out your frustration with their lack of availability by not showing up for appointments you have made.
My comment about D.C. vs. Connecticut was referring to the variations in treatment that occur across the country. This is an unfortunate -- and well-documented characteristic of health care in the U.S. But as it doesn't mean than Connecticut is better than D.C. or vice-versa.
Best wishes -- Jessie

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Ellicott City, Md.: I am a cancer survivor. In hindsight its frightening to me the way I always wore this big smile to show people I was okay. I'm struck that even some of the kids at the St. Jude's Children's Hospital have the same fake smile on for the camera. Do other survivors of illnesses feel this fake happy thing too?

Jessie Gruman: Yep, I think they do, although I think cancer has a particular place in the public's mind -- one that requires us (or makes us FEEL that we are required) to keep a stiff upper lip and plaster on that grin.
Behind that grin (for me and for many people I talked with) is this urge to take care of others -- to minimize their upset, to reassure them that everything is all right.
This is not a bad thing -- it is a burden, though, sometimes. You know.
Jessie

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Arlington, Va.: I was diagnosed with ovarian cancer three years ago and have been in remission for the last two years. But because my type of cancer has a high recurrence rate, it's still possible for it to come back. But most people I know just assume I've "beaten" cancer and tell me to "think positive" if I mention my fears. How do I respond?

Jessie Gruman: Ah, the "hope" question. When I was talking to people for my book, this lovely man told me that being told he would do better if he had hope was like being told that if he was 7-feet tall, he would be good at basketball.
Many of us don't receive the gift of hope and optimism, and it is hard for some people to understand that these things can't be transmitted by their mere suggestion.
You might check out the January issue of Harper's for an interesting essay by Barbara Erenreich on the tyranny of hope.
With regard to people's unwillingness to really talk with you about your illness and your fears -- This is hard, especially when the response is from people you love and whom you hoped would be able to understand this next part of your illness.
You can understand this response -- you wouldn't want to think about this if you didn't have to -- but you must be very disappointed as well.
I hope you find some others who are willing to ride the ups and downs of your illness. This is the kind of thing you might be able to address in an on-line or in person cancer support group.
Best wishes -- Jessie

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Alexandria, Va.: Just a suggestion -- My dad was at Alive Hospice in Nashville when he ended his battle with melanoma. The hospice was not only a beautiful place, but the social workers, nurses, doctors and other families were wonderful. As one woman told me while I was crying in the hall, we're all there for the same reason so go ahead and feel it. Hospice is a wonderful option. It allowed my dad to go as peacefully as possible considering the atrocious pain that cancer causes. And for my mom and me, there was a useful pamphlet they gave us that was explicit about the stages of dying from one month out to just minutes before. While it was still a heartbreaking experience for us all, the information and support where exactly what we needed, when we needed it. I highly suggest everyone looks into hospice.

Jessie Gruman: I agree. And let's get more stories if these positive experiences out there for people to hear. Hospice is still under-requested and under-prescribed.
Thanks for writing! Jessie

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Washington, D.C.: I would love your perspective on outlook. A close family member has stage three lung cancer and I'm finding it hard to stay realistic given the statistics, but not give up hope? What's the right balance there?

Jessie Gruman: Balance is tough.
My experience says stay focused on solving the problems of today and maybe tomorrow morning. You hope that this test isn't too uncomfortable, that tonight includes some good sleep, that tomorrow includes 4-5 hours without pain.
You will learn when you can raise your sights higher, but if you have any doubts, hook your optimism to the moments you know you have with him.
I wish you the best -- Jessie

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Boston: How do you politely tell someone that you don't want all the in-depth details of their serious illness? I don't want to be unsympathetic or rude but I am often uncomfortable with the bodily details.

Jessie Gruman: Hmmm. I'm one for interrupting to say "Geeeeez! That sounds terrible! And so tell me: how you are today?"
But then, I am not always particularly polite.
I realize when someone is telling me this kind of thing, they are asking for me to bear witness to their suffering in some way. Often I care about them, I recognize this need and am interested in listening to them.
In the spirit of encouraging us all to do the best we can at all times (ahem) I suggest the latter approach over the former.
Cheers -- Jessie

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Jessie Gruman: Thanks to everyone who wrote in -- wonderful questions!
The the Web site for AfterShock is www.aftershockbook.com. You can read the introduction and the table of contents there, as well as updating the book's appendices over time with new resources.
It has been a pleasure to chat about these hard, interesting, personal issues here today.
Jessie
Jessie Gruman, PhD
author, AfterShock: What to do When the Doctor Gives You -- or Someone You Love -- a Devastating Diagnosis

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