I am so glad you posted about this as I have been thinking about it too. I am glad that Michelle Obama did publicly talk about MS and in a very touching way but the "positive" spin did have me cringing a bit too. I wonder if anything will come of it as in a real change for the future...as in better health coverage and so forth. Only time will tell.
You know...this would make an excellent topic for a share post. I think when you have a chronic illness there is this unsaid "should" out there that you have to buck up and be a trooper...paste a smile on your face in the name of being positive. But that pressure to put on a happy face just makes one feel more isolated and alone. I am hoping more folk take the time to reflect on this and share their thoughts here.
Great post and insight as usual Lisa!
I get annoyed when people want me to be strong and probably not complain. And for the most part, I don't, unless I am feeling godawful. I think sometimes MSers feel like big complainers when they express how sick they feel. But do well people realize that there is usually some reminder--- a weak bladder, a tingly hand, spotty vision---- that constantly gnaws at us? It's hard to be "strong and silent" for the good of others and it's annoying when people almost expect it. "Isn't she corageous?" Until the shoe is on the other foot, and a well person sees the hardship. I don't wish this condition on anyone, but sometimes I wish people could "try it on" for a day and see.....
I agree with you that it can be disheartening when the only people with MS that we see portrayed in the media and on TV are those who do not suffer severe physical disabilities, double vision or loss of sight, cognitive loss, or changes in their internal health, such as bladder control. It is misleading to the general public and policy makers about the disease and puts many of us on the defensive; why aren't we able to adjust so easily?
I am happy for those who do not have a very progressive form of MS and are able to continue on with their lives with only minor adjustments. Unfortunately, if that is all the public sees it works against our efforts to get the real picture of MS out to the general public and policy makers so we can get good legislation, such as a National Registry of everyone with MS. With realistic numbers from such a Registry we will be better prepared to fight for more federal research dollars for MS and stem cell research.
On another level however, it is misleading to show only one face of MS when there is such a wide range of symptoms and levels of progression within the disease. If Michelle Obama had given tribute to her father and also explained a little about the disease, recognizing how fortunate he was to be able to continue working and making modest adjustments to his life when so many people become physically disabled and are forced to make major changes in their lives and lifestyles, it would have been a much more complete picture and, I believe, better served the MS community.
But we are talking to ourselves, which might serve one purpose but how do we send this message to those controlling the public agenda? We have to continue speaking out in our communities, write letters to the editor and public opinion pages of our newspapers and join MS Society Chapter Government Relations Committees to advocate for more public awareness programs and better funding for research on and treatments for MS. Thanks for sharing your thoughts and beginning this great conversation. Denise
Denise,
I agree that more people with MS need to be stepping forward and sharing what it is like and how it affects their daily lives. I find it interesting though that sometimes I can't even relate to the images put forth by our great NMSS.
I interviewed for an article coming out in the Winter edition of Momentum magazine. And after speaking with the writer for almost 45 minutes, what she wrote DID NOT portray the seriousness of the situation. I was, like, come on now, don't try to sugarcoat things. This can be SERIOUS stuff!!
Some edits were made after I was given the opportunity to proof the article for the actual magazine editor. Maybe more people actually living with the disease need to be the ones researching and writing the articles, not simply a freelancer who specializes in health journalism at large.
OK, off my soapbox. Have you read the detail on the MS Registry Act? I summarized it if you follow the link. Some good things there, but most importantly, getting facts to back up funding needs.
Thanks for commenting and discussing. I appreciate it.
Lisa
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Thanks for the great post. I was interested also to hear Michelle Obama talk about her father's condition. It struck me on two points.
First, when she said her father died early of complications of MS, I cringed a bit since my husband and kids were in the room. I knew my parents and friends would hear that too. I felt bad that they had to hear this and knew they would be taken aback at someone "dying" of MS.
Secondly, while I understand the pride she has in her father's strength while he struggled through growing disability, I chafe a little at the idea that we need to be strong, silent and cheerful while dealing with MS.
None of this is a criticism of Michelle Obama or her father. I admire her and her family. This is simply my own selfish reaction.
Hi Julie,
I think also that "the idea that we need to be strong, silent and cheerful while dealing with MS" was what kinda got me too. Not all MS patients feel strong (probably most feel weakness) all of the time. And as a group, I think we need to be less silent and certainly we can be cheerful, but should not be required to be so.
I guess that's why I had such mixed feelings too. Maybe it reminds me of much of the drug advertisements which have MS patients climbing mountains and such. Not everybody can do that and not everybody can continue to be the bread-winner in the family.
I have to continue to look to myself and figure out why it bothers me so. But I too admire the Obama family and hope that we'll get to see much more of them in the years to come. (Can't figure out what I'm looking towards now can you?)
Thanks for you comment. I appreciate it.
Lisa
Hi Lisa,
I am glad that you feel comfortable saying that you hope tp see more of the Obama's in the future, I totally agree with you. NOT TO MAKE THIS ABOUT POLITICTS. I think any time we see that some one died from complications from MS we chring. I know I do. I have also had MS for over 15 years and I have learned to live with the pain.( some of it, some is just so bad I have to take IV Steroids for it.
I also do not want anyone to feel sorry for me, I also do not appreciate it when someone ( a family member sees me strugling to walk, but will not hold a door open or have a comforting word to say to me. It is almost as thought they are saying, " I know she is putting on, she does not need the cane she is walking with, she did not use it yesterday."
Please don't get me wrong, I don't want anyone to feel sorry for me, I can do that enoough for myself !!!. But come on people have a little compassion. Yes I know that I go shopping when I don't weel good. I pop pain meds and keep on going, people are to ignorant to understand what MS is. I have learned to admit, that it is their own fault not mine.
I am out of town this week, but you will have more support from me when I get home.
Thanks for the job that you are doing.
Candy Lee