What does MS "look like?"

By Paula Burgess Thursday, May 15, 2008

Define the word.............. "Sick" OMG you dont look like you have anything wrong with you..especially MS" I am so tired of what people perceive someone with MS to HAVE to look like..Yes I do take very good care of myself, no I dont look "Sick" but what do they know.I just get dirty looks and people making underlying comments about my parking  in a handicap spot complete with placard of course. I've been yelled at, cursed at..given dirty looks and yes even stopped by police to "check" my placard to make sure it was "me" How embarrassing that was, as everyone in a very busy shopping center at Christmas time staring at me with contempt. Or even sometimes incredible hate stares. I drove a sports car up until last summer..constantly getting harrassed about where I parked my two seater.Comments were overheard many times..for instance "yeah right..she's handicapped.. driving THAT car..sure she is, hah!" Seriously..even though I've had the placard for over 10 years, after my diagnosis which was discovered during surgery for a spinal cord injury that almost left me paralyzed mind you!  I am sick and tired of getting dirty looks and comments from ignorant people who have'nt a clue what kind of pain someone could be in at times..whenever the mood of this lousy disease decides to strike back at us. I  since traded my beautiful car in for an suv..which by the way is more difficult to climb into for me at times than my sports car ever was! The color is also subdued as not to call attention to those ignorant so and so's who don't really give a rodents behind how you feel or what is even wrong with you, as long as they can voice their dirty opinions toward you. I swear sometimes it's because we can park a lot closer than they can, because they're too lazy to walk. I would give anything to be able to walk across an entire parking lot..having to to park far away from the front door of any establisment and be able to walk without pain! How's that one grab you? I have come close to telling people to mind their own business in so many words, but I was brought up to respect others unlike those people today who stick their noses where they don't belong. Once I had an elderly man shake his cane at me because I had pulled into a handicapped spot next to him, and I was the one that was embarrassed.  Another time a younger man screamed and swore repeatedly with very foul language at me that I had a nerve having a placard and that I didnt NEED IT"  He  disgustingly cursed at me because he "watched me walk just fine" across the parking lot.  How would he know my pain... the jerk! I was so shaken up, that I couldnt start the car for a few minutes as I sat there in shock trying to understand how anyone could say the terrible things that this stranger said to me!  I'm a  really nice person..why can't everyone be  non judgemental today.Talk about living in a fish bowl!!  I've had it..I won't put up with  crass behavior any longer from dumb people. If those people expended their energies getting involved to help, rather than degrade and ridicule, it would be a lot nicer out there for us.. I have many times just been so disgusted with the behavior of a lot of uneducated fools that I don't even want to drive anywhere. I recently joined a local gym in my town to try and strengthen my legs so the pain would be more bearable, which by the way is permanent now, and after a few days into my daily routine, one of the trainers came over to me to introduce herself and asked if I was the "one" with MS that they were all talking about in the office. Whatever did that mean I'm not sure, so rather than question her, I graciously told her that she was right. Her remarks were that I looked remarkedly well and that she was surprised that I had actually joined the gym. I thanked her but, still felt very inclined to be suspicious of her many questions. Maybe it was innocent on her part but I'm  so much more on guard today because of the negativities  that I have been shown so many times. After reading about the lack of accessability for a lot of handicapped people, I think something should be done about those who think they know everything there is to know with their opinionated nasty attitudes towards the world of an afflicted handicapped person too. Maybe they could be forced to donate some of their energies as a "fine" into finding a better response towards every negative jerk out there in our defense, for those of us who have been given a little harder course to travel through in our lives. Thank you for allowing me to vent once again. Paula B.

Another "Extreme"
5/15/08 5:19pm

Wow! I haven't had to go thru anything like that but I can imagine how angry and hurt you feel, people judging your situation based on the way you look but not knowing what you feel like inside.  It is very sad and fustrating.  When it comes to MS no one knows how we feel, even if you wore a shirt a cap and carried around a banner that said I have MS, they still would look at you strange because you don't look "sick".  There's really nothing to say is there.  The world won't change. 

5/15/08 8:58pm

Thanks Theresa.. When I get it out I always feel better.  It's as if I somehow "explain" myself... but to people who understand my feelings. Thanks for your support..Hopefully you won't  ever have to go through any of this negative attitude..but just in case you do..let them have it. So much for "silence is golden!"  Be well. Paula

5/21/08 2:40pm

Thanks so much for your post and welcome to our community.  It can be really difficult when people say and do things like you have described.  I guess living with MS presents an opportunity to educate and inform those who are ignorant about the disease.  Good for you for sticking up for yourself and others by speaking your mind.

 

For those reading this that need some help with the symptoms of MS - check out our Quick Glance guide.

 

Hope this helps, all the best, sue

6/ 9/08 7:21pm

PAULA, i KNOW HOW YOU FILL, HOW ARE WE  SUPPOSE TO LOOK? I HAVE BEEN TOLD SO MANY TIMES YOU DON'T LOOK LIKE YOU HAVE MS.I GUESS WE ARE SUPPOSE TO LOOK DIFFERENT THEN OTHER PEOPLE. SORRY HAVING A BAD DAY NANCY ACKERLEY

6/ 9/08 9:26pm

Sorry you're having a bad dad Nancy...it's ok..we can if we want. It it'll pass..they usually do..the quicker the better though.   It seems I have so many odd "obstacles" all the time. It's how I handle them now that is important. Read my newest post..I'm sure you'll understand my attitude..and it might even make you laugh, or at least get your mind off of you bad day. God Bless ,Paula B.

2/19/12 12:46pm

I have had MS for 11 years and fighting every step of the way. I became a Natural Doctor and Holistic Nutritionist, if that is not taking action, I don't know that is. I have been walking with a cane for a couple of years and just started using a 3 wheel walker, when I go to the gym-which is daily; to lift weights or swim. I get all kinds of looks, but my smile gets bigger and bigger. I get stupid suggestions before anyone knows what I am dealing with. I don't share information with people, I just smile and keep moving.

 

If someone has the courage to ask me why I have the cane or walker takes 4 questions to get to the root cause. Question 1: Why do you walk with a limp? Answer: I have trouble dorsa-flexing my foot--sometimes. Question 2: Why? Answer: Lumbar 5 gets out of alignment. Question 3: Why? Answer: I have a neurological condition. Question 4: Really? Which one? Answer: Multiple Sclerosis. Comment: Oh, my God you don't look like you have that! I just smile and wonder what someone looks like with MS...  And on occasion I have been asked if they could catch it. I wanted so badly to say, "Not Usually, but you are so stupid I think there will be an acceptation for you-dip shit!" I try to have the graceful southern demure, but some times I just want to channel a New Yorker and go from there. That is NOT an insult to New Yorkers that is a Southern woman in awe of someone speaking their mind.

 

If you have MS your diet is your first defense, then movement: Swim, lift weights, ride a bike-stationary if that works better.

I was told God is/was mad at me and that is why I am dealing with this. That is just more stupid that people bring into the world. God is not mad at you or me. Move forward and take responsibility for yourself. 

Good luck finding you answers...

 

Cathy, Health Guide
2/24/12 9:05am

Hi Nutrition Lady,

 

I am so impressed that you took the bull by the horns (really!) and got involved in the world of nutrition!  We need more people out there like you, who know our fats from our carbs, our vitamins from our minerals and can help us in our daily quest for better wellness through better nutrition. Good for you.

 

I wanted to comment on what does MS look like.  Twenty-five years ago when I was told I had MS, I had no idea what that was.  I immediately thought, due to better marketing, I had Muscular Dystrophy.  No internet and more television viewing = less education on MS, and at a slower pace.  Anyway, I educated myself via snail mail till computers came along.  What I am trying to say is that today, I no longer get angry if someone asks me questions about MS that seem uninformed.  I simply see that as my opportunity to educate them, to inform them, and to help them realize there is no "one" face of MS, but over 400,000 faces of MS in America.  This attitude works for me, because it allows me to feel less stressed and less angry, and it also helps me feel flattered when someone says, "but you look so good!"

Ask a Question

Get answers from our experts and community members.

Btn_ask_question_med
View all questions (1954) >
By Paula Burgess— Last Modified: 02/29/12, First Published: 05/15/08