Angana left this comment on my recent post regarding Venus Williams' interview on the Katie show:
So many things occurred to me when I read this post. I, too, applaud Venus for sharing her experience with Sjogren's so honestly, bless her heart.
Comments like, "So, you're feeling pretty well, now, right?" is a huge trigger for me, as I suspect it is for a lot of chronically ill people. All sorts of snide, impolite rejoinders come to mind, along with the anger, frustration, and confusion of searching for an authentic yet socially acceptable response. On top of that, this particular comment is a leading question; it directs Venus to answer in the affirmative, regardless of the truth.
But, what would we like people to ask instead, when they ask after our health? For instance, would it have been better for Katie to ask, "How are you feeling right now?" Or, "How have you been feeling since Wimbledon?" That is, of course, assuming Katie really wanted to hear the answer.
And how might we respond to the well-meaning but clueless people we all come in contact with? Since discovering this blog, I have decided that "I'm doing reasonably well" is often the most authentic, succinct response, unless, of course, I can say something like, "well, today I am feeling tired (or achy, or whatever...)
This is a really meaty topic, and I wonder if you might explore it in more depth in a future blog post, Julia.
Angana is right. This is a good topic for discussion, especially her comment: "....And how might we respond to the well-meaning but clueless people we all come in contact with?"
This is hard, especially the "well-meaning" part, isn't it?
Here's an example from my own experience: One day last summer, I was enjoying one of those fabulous times when the energy stars aligned and I was able to shower, apply makeup, and attend an event at our church. I really enjoyed my "feel good" day. An acquaintance approached me and complimented me, saying "Lookin' great, Julia! I'll bet this means that you're cured, isn't that wonderful?"
Um. I smiled at her while thinking frantically about how best to respond. If I nodded in agreement, well.......that would be just wrong. If I got defensive and told her that just because I was having a good day did not mean that my incurable disease was suddenly cured, I could hurt her feelings. And I really didn't want to do that. She really meant no harm, I know it. But it still left me awkwardly wondering what to say, and I believe I stuttered something about having a good day, yes, but unfortunately not cured.... Although this is what I ended up saying, I really didn't feel great about my response. I hate being put into a position where I have to convince someone that I'm not well. I hate that.
In retrospect, I suppose I could have said something along the lines of, Wow.... wouldn't that be great if a cure for autoimmune disease came along soon? But it's not here yet, darn...
Or I could have not addressed her comment at all. Or I could have asked HER how she was feeling these days. Or I could have....I could have....
Hm. There's got to be a better way to handle these situations.
What do you think? How do YOU respond to well-meaning but clueless people?
9 comments:
I would love to have a great response, too. Dealing with my mother is the worst. She is constantly telling me how much better I look (than shortly after my diagnosis). I don't get a break from my symptoms ever. Nothing has helped, and believe me, I have been to multiple specialists over the past 3.5 years, and I've tried everything they will let me try to get some sort of relief. So it really grates on my nerves to have her telling me how good I look when I feel crummy. Unfortunately, my mom has mental health issues, and she needs to believe that I'm doing well in order for her not to have a breakdown. So I usually just mumble something unintelligible, because I cannot bear to agree with her, but I don't want to hit her with the full truth, either. I wish there was a tactful way of telling her that I'm not better. Just because I'm trying not to be sad all of the time does not mean I'm getting well! I only wish it were so!
I've had Sjogren's Syndrome for 22 years, and I'm only 50, so I've had some time to come up with replies to those who mean well but say these sorts of comments. In fact I have written several articles on the subject! But one retort I've found that works for me lately that keeps the atmosphere positive, doesn't make the inquirer feel defensive and doesn't put ME on the defensive is to make a circling motion with my hand around my face and say, "All this is just smoke and mirrors." And if they need an explanation I say, "Sometimes, the worse I feel the more work it takes to look this good!"
Good answer, Kathy!
I'm sorry Anonymous. If your mom has mental issues you're just stuck working with that and have to train yourself not to be bothered. My mother had issues too, and it was hard as a caregiver to do everything necessary and keep a positive attitude so as to provide the best atmosphere for everyone, even me.
A lot of times my reply is to smile and distract 'how are you?'. It's tough when people really want to pursue it and force the issue. I for sure don't want to be 'that person' who is constantly harping on my litany of ills, boring everyone. At the same time I just feel lousy at times, and it's hard to muster energy to say something intelligent, caring, socially aware. Those of us who deal with chronic illnesses joke about lying a lot, in my circle. And then there's the person who always has to one-up everyone else. Lord save us from those people.. or becoming one of them. Frankly, there are more interesting things to talk about than my health. Many people I know don't know about my health limitations, and are surprised when I'm not along and my husband tells them what's going on that day.
All I know is I wish I had the perfect answer all the time, but I generally settle for 'I have chronic immune issues. It doesn't go away and there is no real treatment, but thanks for caring enough to ask, I really appreciate it.' and then ask about something they care about. If they are obnoxious enough to push me or treat me like I'm a crybaby or that they doubt I've pursued all avenues, then I have no problem lowering the boom succinctly and fairly unemotionally. Especially when they're trying to sell me the newest MLM vitamin mix.
I don't think there is any way to avoid afflicting the comfortable when they are clueless, and with the exception of people in our lives with mental illness, I have no problem doing so. Nicely, of course.
"I know you mean well, and I always appreciate compliments, but this illness is for life. And it is an invisible illness,so you can't see how I feel. Today I am having a very good day. Unfortunately, I will pay for it tomorrow, though.
So, what is new in your life?"
Let's not take what happens on a light interview show too seriously. Venus is there for several reasons - mostly, to promote her clothing line, which is a must for her, to continue her income stream when she can no longer play. I say, good for her. The hopefulness in the question is that: hopefulness. We can dash the person's hopes and tell the brutal truth, or we can have a ready response: better on some days than others, better for the moment, "reasonably well". "doing the best I can to deal with the challenges of blah blah blah (whatever is wrong)...there are many responses. Don't blame the questioner - they have no idea what SS is, the long term prognosis, or what Venus has been through since she has not been terribly specific about it.
Thank you, Julia, for this post! It has stimulated the discussion that I hoped it would, and I'm appreciating all the different responses. They gave me some food for thought on how I might interpret the sentiment behind people's comments, and respond to that sentiment rather than the emotions their words trigger for me.
Its wonderful to be able to talk about these issues with people who really do get it! Thanks for this supportive and immensely useful resource, Julia.
My primary care doctor came up with a line that I've invoked from time to time, "You're not in bad shape for the shape you're in!" It says that I'm doing all I can to live with my disease but some things are out of my control.
BeckyJo
Thank you for your blog. So many great topics!
Being newly diagnosed I haven't run into a lot of comments....yet. I do walk with a cane and get stared at a lot, as I am 40 & look healthy otherwise.
But I have multiple life threatening food allergies and frequently get asked, " what in the world do you eat?" I answer "oh you know , meat, veggies, fruit.... the norm". Or if I'm feeling particularly fiesty I answer " I eat very well thank you". ;)
I have learned that most people have no idea what it's like to live with a chronic illness, and 99.9% of people have no idea about Sjogrens.
But I cut them some slack because 1) I had no idea what Sjogrens was either and 2) If I can't understand what all it does to me, how can they?
So I use the phrase (because it literally registers with them) "Yes, it's like having Diabetes. When my insulin is cooperating, I'm having a good day. When my insulin is being stubborn, I'm down for the count. Today, I'm getting cooperation, who knows about tomorrow."
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