Comments on: What’s Wrong With This Picture?

By: Alison

Alison — Sun, 16 Oct 2011 22:22:36 +0000

Unfortunately, it is not terribly surprising that the National Multiple Sclerosis Society is responsible for this image. The message is one of fear…of not knowing when or exactly how our bodies will fail us because of the MS monster (as you put it so well) living inside of us. Fear is a great motivator, though. And since western medicine has not figured out a way to cut MS out of us or eradicate with a pill, we are told that it is an incurable disease that will inevitably lead to disability. Lucky for us (please read sarcasm), western medicine does have jabs (and now pills) to offer us in an attempt to “control” the monster…although the efficacy of these treatments is shaky, at best, by Pharma’s own admission. But if there’s one thing fear does in the face of disease, it’s to sell drugs. And, sad to say, the National Multiple Sclerosis Society is funded, in part, by the pharmaceutical companies (see http://www.nationalmssociety.org/about-the-society/sources-of-support/pharmaceutical-support/index.aspx). Moreover, here is a listing of some of the upcoming “educational” seminars in my area as found on the National MS Society’s website: http://www.nationalmssociety.org/chapters/can/programs–services/education/community-and-pharma-programs/index.aspx. Notice they are all put on by the pharmaceutical companies, who are referred to by the National MS Society as their “industry partners?” Does anyone with MS really want to be a part of an MS “industry?” I sure don’t. Unfortunately, the pharmaceuticals have no interest in curing MS (or any other chronic disease, for that matter). It is much more lucrative to “manage” disease on a long-term basis with drugs (and then use additional drugs to treat the side effects from the first one) than it is to cure the disease. This all sounds so cynical, but I’m sad to say it’s true.

By: Karen

Karen — Fri, 14 Oct 2011 21:26:48 +0000

hi alissa. that’s a beautiful sentiment and beautifully written. it’s very easy to adapt the victim position with a disease like MS – i most certainly have my moments when i feel sorry for myself, but they don’t last. it is with compassion and love that i take the position i do regarding this photo – i believe it to be much more loving to call someone out and say hey, you’re acting like a victim here, stop it because it’s not serving you, than to join the pity party. putting our attention on when the use of our body parts may expire is just about the least useful thing one can do in this situation. i understand the fear associated with MS. i understand the desire to communicate what the experience of having it is to others (though i don’t think it’s possible). and i understand that it is a reality that some with MS do become disabled. but none of those truths make me think this image serves anyone. thanks alissa and everyone who has shared their thoughts here.

By: Alissa Allery

Alissa Allery — Fri, 14 Oct 2011 18:25:12 +0000

I agree with you Karen, I have had MS for 7 years. That picture is the perfect depiction of the deep dark fear MS brings. It does not empower me. It does not inform me. It does not give me the will to go on. I have to fight sadness and fear just reading this discussion. In my very soul I know I can heal myself. I see this picture as another challenge for me to get stronger but quite frankly I don’t need anymore challenge and feel this image puts unnecessary pain and stress on people who are choosing not to be victims. I choose however, to be grateful for every challenge and every person like you who is out there. I realize there are different views out there and I respect them all. I am just being honest about how I feel. I would like to send all my love and positive healing energy to everyone on this blog. We may have different views but I love you all.

By: MS'er

MS'er — Wed, 20 Apr 2011 18:32:02 +0000

I can understand your view point in that it can appear as a self-pitying monster of a disease in the picture. However as an MS’er, I know it is difficult to explain to non-MS’ers what is going on in my body and the sudden unexpected threatening prompts alerting me to sit still or else. It has kept me physically from moving to a degree but it has not immobilized my hopes in life.

MS actually has been a good thing in that I have banded with a group of people who all serve to constantly encourage one another with the FIGHT MS mentality… not the one that you have misunderstood is embraced by the MS community. I suppose similar to groups fighting cancer, it brings people together with an immense sense of empathy, brotherhood and encouragement.

Although there are times when the unexpected and sudden debility becomes a shocking reality of what we live with, most MS’ers have an outstandingly and brave attitude, which is so admirable.

By: Elaine

Elaine — Fri, 15 Apr 2011 16:22:44 +0000

Me doing an edit… It should read “…can’t write more…”

By: Elaine

Elaine — Fri, 15 Apr 2011 16:20:59 +0000

My take, if you will, on this photo and concept is that it is a warning to young women. Don’t smoke there is a link to MS. And it tells it like it is. Having symptoms arise at 32, I wish I had done more before that age even though I actually did alot. The concept doesn’t just refer to MS – it could be any dreaded disease that strikes out of the blue – like ALS. Sorry can write more my hand time is expiring. And I used to work in a research lab using my excellent fine motor skills and I used to sew all my own clothing… Use it or lose it? Live well – and while you are at it stop smoking, take your vitamin D and FIND A CURE that does not cause side effects and another disease!!!!!!!!!!!!!!!!!!!

By: chris dekorte

chris dekorte — Sat, 02 Apr 2011 14:29:05 +0000

Its great attitude to have I wish I had it.
I need to work on it harder myself.

By: Sandy Smith

Sandy Smith — Tue, 08 Mar 2011 11:35:56 +0000

I looked at the picture and thought, “ok…so this is a picture of what MS “CAN” do”… but it is not what I WILL LET IT DO to ME !!!

By: Karen Williamson

Karen Williamson — Mon, 27 Dec 2010 20:08:22 +0000

That’s the thing, Cynthia – for many of us who have had MS for some time it does and has happened to us and no amount of healthy diet, constructive thinking, meditation, therapy, whatever exercise we can manage has made any difference.

Forgive me, Karen, but you appear to be coming from a place where your MS is in its early stages and I sincerely hope you can stay well. I had my first mild symptoms over 30 years ago, was well for the next 20 years and now am just getting worse and worse. I follow the advice of people like Drs Jelinek and Wahls and hope …

For all of you who have are in the early stages of the illness I hope that you can stay well and a cure will be found before too long. Prof Franklin at Cambridge University (UK) is doing great work with adult stem cell research.

I think the poster may help some people to understand a little of what it might be like to have MS and maybe this will help funding. My friends see me getting worse in terms of ability to walk but have no idea of the unseen symptoms – numbness, cognitive impairment, burning sensations, fatigue, pain etc.

This may be viewed as a negative ramble but sometimes I just feel that even people with MS don’t understand me or others with more severe MS. Have you ever been to an MS therapy centre and seen just how bad some people are with tremors, speech problems and needing full-time carers?

Having said all that I still wish you good luck. Be as well as you can be

By: cynthia

cynthia — Wed, 27 Oct 2010 01:11:42 +0000

Hate to say but that’s what does happen and what’s happened to me.