YES! Lauren Shuler Donner, A -list producer of Pretty in Pink, St. Elmo’s Fire and X-men series among others, lives with Lupus. What do you KNOW?
After years of hiding this illness ( as well as breast cancer) , she’s “come out”. “I was afraid no one would hire me, and I also felt it was deeply personal. It was nobody’s business. Now, of course, my feelings have changed.”
What changed her feelings? I haven’t a clue but it’s a good thing. Those of us with chronic illness — who know what it’s like to fear we won’t get hired or lose our job because of illness — can only benefit from this public declaration. Ms. Donner is right that it was nobody’s business but I, for one, am glad that she no longer feels that way. By making this news public, she’s letting the world know that even with chronic illness, she could get her job done…. and then some.
As another blogger in StateandLake said, It is the only way we can learn, be inspired, and find ways to overcome or at least live comfortably with our ongoing ups and downs.
Most of us won’t accomplish what Lauren Shuler Donner has. Nor would we try.
But if I could interview her, I’d ask her:
Lauren, What do she think helped you achieve what you did? Did you have a boss that allowed you to have a flexible schedule? Were you able to pick and choose when you could work? Were you able to take time off when you needed to? How did you get through a day when you felt like crap? Was there anyone who mentored you around balancing work and bad health?
I have a hunch the answer would be NO to those questions and that Ms. Donner probably was fortunate enough – for whatever reasons – to be able to work through her difficult times with illness. It’s safe to say that she only “came out” once she was solidly established.
I am not criticizing her or her timing. I’m delighted that she took this very personal risk. But here we go again – a woman (and probably a man would have take the same approach) afraid to say the truth about physical health out of fear that people would make assumptions.
As I said, hooray that she has told her truth. It’s tiny steps to change attitude about what people with chronic illness can do and what they need to do it What’s it going to take to change the environment we work in?
Rosalind aka cicoach.com
Maria says
I hear you, Rosalind.
In June, during what has been labeled by the LFA (Lupus Foundation of America) as Lupus Awareness Month, I started up my program out here In Oregon and SW Washington (Pacific NW to us) hoping to stir up a little noise regarding lupus. In order for the rest of our community’s structures (healthcare, social, political,
economic and employment, etc. ) to take notice to the challenges facing so many of us with chronic illness, we have to show that we are worth listening to. We have to define what living with this illness is about and take some pride in the fact that we DO live with it—every day. There is a tremendous resource going untapped from those with chronic illness only because no one is taking the time to point out the gaps, misconceptions
and, yes, the opportunities possible.
I know it sounds like a bandwagon and that I’m not saying anything new to you – but I hear your frustration in your blog and want to agree. Often times, I feel as though I am a breast cancer survivor in a lupus body – only because living with my health challenges gives me a sense of personal accomplishment. It is very clear how much courage and passion to educate the breast cancer community has to offer, and I want a part of that action. I want people to know I have lupus – because I’ve worked hard at living with it and I believe my silence only holds back all of the awareness-building efforts. I understand the concerns regarding public or employment scrutiny – I also understand just how many of us with lupus will remain unheard unless we start doing something. I want to be a part of helping those younger than myself to lead better lives with lupus. Here in Oregon, we have lost support groups, remain silent at community symposiums that eventually get cancelled, have fundraising opportunities that never make it into the media nor are they well attended…
I would much rather speak for myself regarding living with lupus than have someone do it for me. Last night, a friend mentioned that she worked with a gal who had lupus who just didn’t show up for work one day. This friend said that she knew she had lupus, but didn’t realize it was life threatening (she worked with her for over 10 years! ) Her co-worker died and took that educational opportunity with her – leaving my friend still clueless to what lupus is really about. Its time for me to have a talk with her, so that she will know more the next time she works with or meets someone who has it
I hope that others with lupus will begin to find the courage to live well with lupus and come out of the shadows. If we don’t, we lose much more than just our privacy – we’ll lose opportunity.
Wishing you the best of days as always~
Rosalind says
Thanks for this response, Maria. I don’t want anyone to think I’m advocating that everyone should disclose that they live with CI. It’s a biased and difficult world that we live in and we’ve all experienced it. You’re doing a great job of making a difference for people but as we know, not everyone can do so. I believe societal/workplace shifts will happen — over time – with boomers aging. But I understand why people are afraid. We can’t change those around us — we can only work to develop our competence in managing these issues as best as possible.