About that official tagline, "I live with MS"...

[hope32]

Yeah ... I think people should use whatever tagline resonates with them and is meaningful to them, but I admit some make me cringe a little.

I went to a local MS support group meeting and I felt like they were *overly* positive, like "Well if you just have a positive attitude you can fight through whatever symptoms you're having; MS can't stop you from doing whatever you want" BS. :P Mine has been relatively mild, though my two major attacks were pretty debilitating so it got off to a scary start, but that still irritates me. I tend just to not talk about it a whole lot except with closer friends. I'm a lot more likely to talk about it with friends who were with me during my attacks/diagnosis, because they "get it" a lot more.

[SNOOPY]

Seamsguy is just telling it like it is...at least for him. Why are you annoyed??

I'm not annoyed with SEAMSGUY or this topic.

Am I missing something or is this thread going in the direction of those phrases/sayings/terminology that makes those with MS cringe/angry/annoyed ect?

In the spirit of this thread I find the term "suffering" annoying, at the very least. I also don't like being referred to as "sick," I have a disease, I'm not sick Semantics? Probably.

This, for me, is no different than someone telling me I am a victim (personal and not based on MS). I hate the term "victim." I am not a victim but I am a survivor.

[abeautifullife]

The last thing I want to do is "rain on somebody's parade" when it comes to how they fight or cope with their MS.

I think differing attitudes are natural when considering everybody has a different disease course. When you can still walk, work, etc., then sure "you may have MS but it does not have you.". When your like me, that line is a joke. There are a lot of people I would consider in denial about "beating MS" and believing they can be cured of MS. To each their own.

What I find the most annoying is that how the MS Society...in their magazine and other advertisements constantly show people with MS biking and hiking and running. That the highest profile MS'ers like Ann Romney and Jack Osbourne look like there is nothing wrong with them. Why donate to MS when you can still "Dance with the Stars", especially with so many other diseases competing for precious research dollars. It does our cause no favors and I find it super annoying.

I think that this is a really great response. On the topic of able-bodied representatives through NMSS, I think one of the goals that this does accomplish is not stigmatizing PWMS. One of the fears I have about this disease is that people/employers will assume I am unemployable or unable to carry on with life. I am unbelievably lucky thus far in that I am asymptomatic (except for in heat, which makes me limp a bit). I am also young, and I want to be able to have a shot at my career, do what I love as long as I can. I worry that most of the messages out there on the internet about PWMS don't represent people like me. This is such a crazy, random disease.

For what it's worth, I would be proud to be represented by an individual in a power chair or using a rollator on the cover of the NMSS magazine.

[Seasha]

When I was fist dx, I was one of those who said, "I have MS but it doesn't claim me - me, being the very true essence of who I really am. In some ways it still doesn't claim me and I know that am much more than this lousy stinking disease! Now, years later, I am reminded every day that MS has claimed & taken away most of my abilities. But, even tho it's taken away so much, there is so much more to me than my broken physical body and mental capacities.

Hey! I just want to please remind everyone that we need to show respect and support towards others regardless of their use of terminology. Whether we suffer, adapt, survive, drown, rise above, deal with or not deal with, cope or not, etc. we all are in the same boat here.

[rdmc]

I think most of the taglines come from marketing firms trying to move some expensive drugs or "treatments" not people with MS.

It would be difficult to sell anybody with a realistic tagline like; - Wow this is MS? I feel like POOP!!!

Or,- MS last's forever even if you take this expensive krap!

I think you're right about the slogans and the med companies. I hold to the Princess Bride School of Philosophy: "Life is pain highness, and anyone who tries to tell you otherwise is probably trying to sell something."

Seriously though, there was probably a time when I felt like MS didn't have me...but that didn't last very long. I learned early that my control of this disease is an illusion.

But as to folks complimenting us or saying we don't appear to have MS or we look so good...I just had someone tell me that this week...it's not their fault. Truth is most of us, me included, are good pretenders, and we don't want to be party poopers so we face "muggles" (my favorite word for non MSers) and muddle through our "public appearances."

I know I'm a good pretender but what the person who gave the compliment doesn't know and what I won't tell them is:

1. I might look "normal" but I may be feeling awful, and pushing to the back of my consciousness the pain and weird sensations, and sensory overload I'm having the entire time we're talking.

2. I practice better living through chemistry, i.e. I took that handful of pills before this meeting to calm down my symptoms. In some of our cases, we're walking (or riding) around with a hockey puck in our belly, and a tube delivering meds straight into our spines and that's why we look more normal and our legs aren't twisted up.

3. I've done an inordinate amount of planning to make this meeting or event. Everything from making sure I get a shower enough time before the event so we can "rest up" before leaving. And making sure I don't do too much on any give day. Most important, have an escape plan in case things go terribly downhill and before my MS creates a scene...granted maybe vanity on my part, but that's just the way I feel, why ruin someone else's day/evening because I have an embarrassing MS moment, and others become aware of the straits I'm in.

4. And they have no idea the only meds we're offered for slowing down the disease are exorbitantly expensive, and each carry their own list of possible side effects, some life threatening. But we take them because there's the chance they might help

I'm sure we all have things we've thought of sharing with the uninformed, but it's just not worth the energy.

[Windwalker]

On the topic of able-bodied representatives through NMSS, I think one of the goals that this does accomplish is not stigmatizing PWMS. One of the fears I have about this disease is that people/employers will assume I am unemployable or unable to carry on with life.

That is a really good point...and one I had never considered.
Thanks

[sbates]

My annoyance is people who are uneducated on the subject so they speak out of their butts in an attempt to comfort you. I get it....I was uneducated before my diagnosis. I now will make sure I know more facts about a persons condition before I attempt to make them feel better with my ignorant consolations. Another annoyance would be the hype with Jack Osbourne. Oh the poor guy lost his vision and was temporarily paralyzed but now he's able to be on dancing with the stars. My take on that is....must be nice to have your daddys money and be able to move to the front of the line to see the the best drs and get the best treatments As far as taglines, I haven't had a use for one just yet. Who knows, I'm still new!

[misslux]

On educating others so they don't annoy us with misguided comments:

I think education and communication is important so that they have more knowledge and also realistic expectations. I always start with sending people a link to "The Spoon Theory" (google it if you haven't read it) since fatigue is my biggest issue when it comes to functioning. I mean, I have permanent mobility issues that do indeed suck, but once my fatigue sets in, game over. Nothing works correctly, even my "good" side. Can barely lift my good arm.

Anyway, those that I've sent that and a few other educational links to have appreciated it and no longer say well-meaning, but misguided things.

[tommylee]

I'm sure we all have things we've thought of sharing with the uninformed, but it's just not worth the energy.

Exactly!
Sometimes I prefer it when people think I am drunk. At least then they don't feel sorry for me.
I would rather be looked at as a drunk normal guy than some poor sap that will never get better.

I do less explaining all the time. Just let people think whatever they like. I don't feel like educating an ignorant world, I am too tired.

[KatieAgain]

I personally don't want anyone thinking I am drunk. Since I am retired and don't face the problems that can occur with possible discrimination in the workplace...so I educate everyone I can. I let everyone know I have MS...even when I look completely fine.

But I also understand people being too tired and worn out to educate...because I have felt that way too. IMHO, what the MSers need is an organization that advocates and actively educates the general populace about MS. And yes, using people who are running and playing volleyball is not representing MS as a whole. IMHO, NMSS is not doing that, so that sort of puts the ball back in our court.

For example The American Cancer Society and the Susan G. Komen Foundation do a great job of educating the general populace about breast cancer. Everyone in the US knows October is National Breast Cancer Awareness Month. Everyone knows what the pink ribbon is for. There are several fund raisers going on. Our fire department painted one of their fire trucks pink and all the firemen are wearing pink shirts.

We don't get that kind of awareness in March. We have a walk/run and biking event that is normally attended by our family and friends. But it pretty much ends there.

I was in my Cancer Center the other day where I get my Tysabri infusions and they all had on pink shirts and pink ribbons were hanging all over the place. As I was getting my blood drawn, I said, "You know that March is MS Awareness Month and the Orange Ribbon and T-Shirt is for MS. Are you going to have orange ribbons and T-Shirts for all your patients that have MS?" They were not aware of the March activities. Long story short...by the end of our conversation, the answer was yes...they will be promoting MS education, and the oncologist assigned to me is going to bike the 150 in my name.

If everyone of us did just a little bit of education...it would go a long way for the entire Community. I sure would like to see a Commercial in March sponsored by the NMSS shown during prime time. The money spent would have a ten-fold return.

In, Katieville, and this is just my opinion, the current MS Community has a personal responsibility to educate the general populace about MS. We owe it to future generations of MSers and hopefully make their paths easier then the ones we are on. I consider it part of being a good citizen.

Folks...this is just my opinion...we all are allowed to have one. Please don't blast me out of the water on this.

[misslux]

Katie, all very well said.

[Tawanda]

I think you're right about the slogans and the med companies. I hold to the Princess Bride School of Philosophy: "Life is pain highness, and anyone who tries to tell you otherwise is probably trying to sell something."

Seriously though, there was probably a time when I felt like MS didn't have me...but that didn't last very long. I learned early that my control of this disease is an illusion.

But as to folks complimenting us or saying we don't appear to have MS or we look so good...I just had someone tell me that this week...it's not their fault. Truth is most of us, me included, are good pretenders, and we don't want to be party poopers so we face "muggles" (my favorite word for non MSers) and muddle through our "public appearances."

I know I'm a good pretender but what the person who gave the compliment doesn't know and what I won't tell them is:

1. I might look "normal" but I may be feeling awful, and pushing to the back of my consciousness the pain and weird sensations, and sensory overload I'm having the entire time we're talking.

2. I practice better living through chemistry, i.e. I took that handful of pills before this meeting to calm down my symptoms. In some of our cases, we're walking (or riding) around with a hockey puck in our belly, and a tube delivering meds straight into our spines and that's why we look more normal and our legs aren't twisted up.

3. I've done an inordinate amount of planning to make this meeting or event. Everything from making sure I get a shower enough time before the event so we can "rest up" before leaving. And making sure I don't do too much on any give day. Most important, have an escape plan in case things go terribly downhill and before my MS creates a scene...granted maybe vanity on my part, but that's just the way I feel, why ruin someone else's day/evening because I have an embarrassing MS moment, and others become aware of the straits I'm in.

4. And they have no idea the only meds we're offered for slowing down the disease are exorbitantly expensive, and each carry their own list of possible side effects, some life threatening. But we take them because there's the chance they might help

I'm sure we all have things we've thought of sharing with the uninformed, but it's just not worth the energy.

As usual, rdmc, your post really resonated with me. I feel like making a copy of this and giving it to everyone I know, started with my husband! Of course, suffering in silence is just one more symptom of this disease when after a ton of effort, you look better than you feel.

[Tawanda]

I feel like poop, too!

I think most of the taglines come from marketing firms trying to move some expensive drugs or "treatments" not people with MS.

It would be difficult to sell anybody with a realistic tagline like; - Wow this is MS? I feel like POOP!!!

Or,- MS last's forever even if you take this expensive krap!

Hahaha! I like your tagline much better. At least it's honest

[hobbit]

My tagline.

I have no problem telling people "I have MS, my options are adapt or die."

I was arrogant when I was first diagnosed 19 yrs. ago and my symptoms were mild and manageable. Now I am humbled by this disease and by my ravaged body.

Anna

[Tawanda]

I have no problem telling people "I have MS, my options are adapt or die."

I was arrogant when I was first diagnosed 19 yrs. ago and my symptoms were mild and manageable. Now I am humbled by this disease and by my ravaged body.

Anna

"M.S.: Adapt or Die!"
Wow...yet another more honest and improved motto IMO!

I don't know if I wad ever arrogant, but I definitely lost my self confidence when I gained this disease.