According to a survey of 1,000 people, (thank you Amy at Diabetes Mine for the direct link) 82% of respondents said they knew someone with a chronic illness but only 34 percent were likely to suggest ways for this person to better manage their care.
Well, hurray for the 66% who know better than to give unasked for advice!
But, this is a critical topic. I’ve heard too many stories of supervisors who hesitate to say anything about an illness (but they’re thinking it’s time for something to change or this guy or girl isn’t long for this job) because they don’t want to offend an employee. And the employee hasn’t got a clue about what the boss is thinking.
Living with chronic illness — you can forget that other people don’t know what to do or say. And – that’s not just your neighbor or mother-in-law. Your boss or co-worker feels this, too. And, that can be dangerous to your work health.
Like it or not, you have to create the conversation so it achieves what you need – empathy, decreasing isolation, help and accommodations when you need it. If you can’t do it, get help. I coach people daily on how to create conversation that achieves their desires. It’s not rocket science but it can be more than you can do on your own.
Rosalind
Diana Brice says
I couldn’t agree more. Since being diagnosed with Lupus I have been as transparent as I could be with colleagues about the disease itself, my symptoms, what I needed from my workplace to enable me to do my job and being open to talking about chronic illness in general. Last spring I did a workshop for staff on working with chronic illness and was able to change the thinking of at least one attendee. I have found that most of the time people just need to understand what’s going on when your behavior is different than it has been and they will accomodate your needs as much as they can. When they don’t know that you have a chronic medical condition they frequently assume the worse and think you’re just being lazy and trying to get away with not doing your share of the work. I know that all workplaces are not like the ones I have been part of and that talking about a chronic medical condition can result in punishment and loss of job. That’s really a shame but it does happen.
Rosalind says
Yes, Diana, it is a “shame” but reality. So, all we can do is our best to know what we want to to say to people and h ow to respond. Then we can continue to hold ourselves with dignity and strength. Illness is not, should not, be a taboo. It is a fact of life that we all, at some point or another, have to live with. It’s how we live with it that’s the issue.
AmyT of www.diabetesmine.com says
Hey Rosalind,
I just did a post about this very same survey at http://www.diabetesmine.com/2007/10/politics-religi.html .
I think it’s important for friends & loved ones to TALK, but not necessarily to give advice. Love to hear your take…
Best,
AmyT
Rosalind says
Hi there AmyT (and for those who don’t know her, she’s got a fantastic blog — even if you don’t have diabetes it’s a must read)
I think this is a subject worth lots of converstion because can make the difference between horrible isolation and being comfortable in the world. I’ve written newsletters on this (and a soon to come eBooklet with a chapter called, What I’d like you to Know about Living with chronic ilness) – Bottom line is most people give advice — they don’t know what else to do — if it even comes up. And that’s the conundrum — we don’t always want to be the ones who bring it up on the other hand when others bring it up, it can be the wrong time (your kids or boss is standing there) or the wrong day (you’re tryng not to think about it) or just not on your mind and don’t want to be reminded. I suggest that we have to think about what WE want — and then be sure we respond to others to encourage that response or action. As I said, — it’s a big big topic.
Barbara Kivowitz says
Hi,
I just discovered your terrific website. It’s a deep well of encouragement. I’m glad I’m here.
I too noticed this study (and blogged about it). The bit that caught my attention was this:
Twenty percent of respondents said their spouse was the easiest person to give advice to about health. However men have an easier time offering health advice to their spouse (28 percent) than women (19 percent).
This means that there are a whole lot of committed couples who are not talking about an illness that affects their lives and relationship, maybe on a daily basis. Why not??
I have been living with a chronic pain condition for 7 years. I wouldn’t have made it as far as I have without the love and support of my partner. I am lucky. I even started to talk to other couples living with chronic illness to learn about how they deal with the impact. As you can imagine, there are many variations, and not a lot of information out there. I blog about the topic of couples dealing with illness at:
http://www.insicknessinhealth.blogspot.com
Rosalind says
I’m glad that you find this useful, Barbara. But, as you said, you’re lucky — not only because of your partner but also because of who you are. You’re able to turn this into something positive for yourself. My goal is not just to be a source of encouragement but to give ideas about how you can take action.