Comments on: Hollywood producer tells her truth http://workingwithchronicillness.com/2008/06/15/hollywood-producer-tells-her-truth/ Sat, 10 Jan 2009 00:01:18 +0000 http://wordpress.org/?v=2.5 By: Rosalind http://workingwithchronicillness.com/2008/06/15/hollywood-producer-tells-her-truth/#comment-2862 Rosalind Wed, 18 Jun 2008 14:35:33 +0000 http://workingwithchronicillness.com/?p=372#comment-2862 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. 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.

]]> By: Maria http://workingwithchronicillness.com/2008/06/15/hollywood-producer-tells-her-truth/#comment-2860 Maria Wed, 18 Jun 2008 02:06:37 +0000 http://workingwithchronicillness.com/?p=372#comment-2860 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~ 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~

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