mobility issues

Dealing with Public Insensitivity Towards MS

Dan and Jennifer Digmann Health Guide May 29, 2012
  • Forgive my sensitivity, but… Ever have one of those mornings?   You know the kind where if something can go wrong, it will. Or a morning where you are running late for your something or other, and you’re not sure why. Or if you try to use your hands to hold something, and it continu...

17 Comments
  • Hollyk
    Jun. 29, 2012

    I have to say how sorry I am for the fact that others can be so incredibly insensative.  It shocks us that in this day and age of 'sensativity' to others different than us-there are still those out there who lack a brain or common sense.

     

    Remember though; those of us fellow MS'ers who aren't in wheel chairs (yet)-the scrutiny and the ridicule is...

    RHMLucky777

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    I have to say how sorry I am for the fact that others can be so incredibly insensative.  It shocks us that in this day and age of 'sensativity' to others different than us-there are still those out there who lack a brain or common sense.

     

    Remember though; those of us fellow MS'ers who aren't in wheel chairs (yet)-the scrutiny and the ridicule is off of the chart.  You can't see spasicity; vibrations, sensations; loss of vision-loss of hearing; dizziness, sexual dysfunction; loss of cognition-..if you are fortunate enough to still be able to walk-you are labled a liar-faker or doubted for your sincerety.  Add to that; those of us who endured years of testing before we were actually diagnosed.  The humiliation of going through a neuropsychological exams...the MS Society itself is a main contributer to alienating MS sufferers.  Think about the 5% of people who will never show a single lesion-yet have MS.  Doctors who are more worried about make a T time than treating anyone who needs more than an RX given to them.  Or worse-a doctor knowing you have MS and not telling you so they can 'milk the insurance' performing mulitple unneccessary tests...

     

    I have had only a few symtoms that have been visually present...no one really sees them-the rest of what I suffer is invisible to the eye...that doesn't make my pain and disability any less real.  I physically choke on most of what I eat and asperate nearly every time I drink without a straw (I even asperate my own saliva)...but I've adapted (as the human body does) and so it is less noticable to everyone but me-I am concious of every single swallow-praying to God I don't choke and screaming at myself inside not to panic when I do.  

     

    When the MS Society goes back to allowing the doctors to make the diagnosis of MS based on their findings of their patients history-for those of us who weren't 'fortunate' enough to show lesions right away. When it does away with the humiliation of neuropsycological testing (other than to reveal the actual level of dibilitation-meaning get rid of that stinking interview) then maybe we will start progressing in sensativity as a nation.  

     

    BTW-my neuro-psyc test revealed and proved up my actual dibilitation.  It helped me so to speak-to prove that I wasn't 'faking it'; my problem is the fact that I had to prove it in the first place. It was very humiliating and I felt as though the doctor examing me was playing 'god'.  I am concerned for those who are still in the land of limbo; having spent so much time there myself.  The criteria is limited and keeps a large segment of sufferer's (5% who will never show a lesion-but what about those who take years before 1 even shows up) from getting the treatment they need-treatment that might have slowed down the progression when the disease was still managable and when MS'rs could still walk.

     

    My prayers are with you all; God's Peace!

  • Lynstace
    Jun. 08, 2012

    I can certainly relate to a "bad day".  I agree, shopping is a great therapy.  Now, I just laugh off the ignorant remarks.  I just blow it off.  Not worth getting upset over things we can't change.  Hold your head up high and Happy Shopping.

    • Dan and Jennifer Digmann
      Health Guide
      Jun. 08, 2012

      I hear you Lynstace. Isn't retail therapy wonderful!! Especially when there are no ignorant people involved.

       

      Here's to no lines and a good bargain!Kiss

       

      ~Jennifer

       

       

  • Michaelbgerber
    May. 30, 2012

    The real disability is not having to use a wheelchair or scooter. It is the ignorance or insensitivity often displayed by so many otherwise well intentioned individuals. The fact is that living with a disability has certainly increased my sensitivity and for that I am grateful. I can only hope that others will learn what we have learned without having to live...

    RHMLucky777

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    The real disability is not having to use a wheelchair or scooter. It is the ignorance or insensitivity often displayed by so many otherwise well intentioned individuals. The fact is that living with a disability has certainly increased my sensitivity and for that I am grateful. I can only hope that others will learn what we have learned without having to live through it themselves.

     

     Thank you for being a great example to us all.

     

     Michael

    • Vicki
      Health Guide
      Jun. 06, 2012

      Hi Michaelbgerber,

      As I began to learn more about MS, I assumed the general population is ignorant. This was before I ever thought of a wheelchair for me. I think I assumed so many people were ignorant because I know I was. I confess that I still am. There is so much I still do not know.

       

      I would like to help other people learn about MS, about what it...

      RHMLucky777

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      Hi Michaelbgerber,

      As I began to learn more about MS, I assumed the general population is ignorant. This was before I ever thought of a wheelchair for me. I think I assumed so many people were ignorant because I know I was. I confess that I still am. There is so much I still do not know.

       

      I would like to help other people learn about MS, about what it means to use a wheelchair because there is no other choice for mobility. I would like to help people understand how important sensitivity isa. I need to practice more sensitivity myself.

       

      I think you are right, Michael. The real disability, the universal disability, is ignorance

    • Dan and Jennifer Digmann
      Health Guide
      Jun. 06, 2012

      Thanks, Michael!! And you know that you too are a great role model.

       

      Best,

      Jennifer

  • Brenda
    May. 29, 2012

    Jennifer, I am so sorry that happened to you!  Why there are so many ignorant people in this world is a mystery to me.

     

    Like, the commenter before me, I too have had said to me they wish they had a scooter like mine.  I tell them they can gladly have mine if they just take the MS with it.  Shuts up some, doesn't others, and unfortunately...

    RHMLucky777

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    Jennifer, I am so sorry that happened to you!  Why there are so many ignorant people in this world is a mystery to me.

     

    Like, the commenter before me, I too have had said to me they wish they had a scooter like mine.  I tell them they can gladly have mine if they just take the MS with it.  Shuts up some, doesn't others, and unfortunately I don't feel like they still get it.  

     

    A scooter I can more readily understand when others comment but a wheelchair!  No common sense in people like that.

     

    Keep your chin up and keep on educating the ignorant.

     

    Love ya!!

    • Vicki
      Health Guide
      Jun. 06, 2012

      Hi Brenda,

      You see, most of us have at least one little story.

       

      When I had my Amigo scooter, my mother called it my golf  cart. After I had it a few years, I saw ads for a similar cart -- no arm rests, very light, inexpensive -- so anyone could have one. I used Amigo scooters for more than 16 y3ars, so I understand their attraction. It is harder...

      RHMLucky777

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      Hi Brenda,

      You see, most of us have at least one little story.

       

      When I had my Amigo scooter, my mother called it my golf  cart. After I had it a few years, I saw ads for a similar cart -- no arm rests, very light, inexpensive -- so anyone could have one. I used Amigo scooters for more than 16 y3ars, so I understand their attraction. It is harder to understand the way some people express it. 

       

      I agree with you about the wheelchairs. Some are more intimidating than others, but the scooters just look like fun to people who walk upright.

    • Dan and Jennifer Digmann
      Health Guide
      Jun. 06, 2012

      Thanks, Brenda! And, of course, the feeling is mutual Smile

       

      -Jennifer

       

  • Anonymous
    Muff
    May. 29, 2012

    I use a scooter at times, especially if my walk will be more than 10 feet! Wink One day, while I was visiting my mother in her nursing home, a nurse (yes, an actual medical professional) saw me coming down the hall, and exclaimed, "I'm so exhausted, I wish I had that scooter!" I stopped, kept smiling, and responded, "Well, you're welcome to mine if you also...

    RHMLucky777

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    I use a scooter at times, especially if my walk will be more than 10 feet! Wink One day, while I was visiting my mother in her nursing home, a nurse (yes, an actual medical professional) saw me coming down the hall, and exclaimed, "I'm so exhausted, I wish I had that scooter!" I stopped, kept smiling, and responded, "Well, you're welcome to mine if you also want to take all the other problems that cause me to use it." She got serious and said, "I'm really sorry. That was totally wrong of me to say."  Several people witnessed the exchange, and I think it became a teachable moment for all of them. I didn't let it spoil my day -- I just marked it as another day in my MS journey!

    Peace,

    Muff

    • Vicki
      Health Guide
      Jun. 06, 2012

      Thank you, Muff. I am going to tell you my story.

       

      My first stop one day was the post office. I was having trouble with the door. A woman about my age opened the door for me as she said, "I wish I had your cart because I'm lazy, too."

       

      I focused on he last word. TOO?! Her assumption was that I am lazy although I got ready, put my scooter on the...

      RHMLucky777

      Read More

      Thank you, Muff. I am going to tell you my story.

       

      My first stop one day was the post office. I was having trouble with the door. A woman about my age opened the door for me as she said, "I wish I had your cart because I'm lazy, too."

       

      I focused on he last word. TOO?! Her assumption was that I am lazy although I got ready, put my scooter on the list, drove myself using hand controls, and the post office was only my first stop of the day. I took my indignant self to the mall to finish my Christmas shopping. I met two other memorably vocal shoppers that

      day.

       

      First was a woman who would have liked my cart to help carry her packages. Next was a teenager who had to walk all the way to the other end of the mall.

       

      I think there is a project here. If we -- you Muff, and I, partner with the MS or maybe broaden it to the disability community -- compile little stories like these into a book. It would be cute phrases that are actually proof of ignorance. It could be kept next to books of quotes in the library.

       

      And proceeds can be donated to the charity of our choice. Hmmm.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

    • Dan and Jennifer Digmann
      Health Guide
      Jun. 06, 2012

      Lazy, huh? How rude! And that is a fear of mine, because I use a chair and am not slender, do people figure I'm lazy? Guess I can't worry about that.

       

      But isn't it just common sense, if you don't have something nice to say - Don't say it! Looks like common sense isn't that common after all, right Vicki? :-)

       

      - Jennifer

    • Anonymous
      gerri
      Jun. 07, 2012

      don't know what the age population is here..i am in my late 40's and through various mgmt courses have learned that the current generation is the 'ME' generation and that they folks DO have a lack of common sense.

       

      look at how the current generation has developed..they don't have to think for themselves..sit and play video games..don't know how to...

      RHMLucky777

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      don't know what the age population is here..i am in my late 40's and through various mgmt courses have learned that the current generation is the 'ME' generation and that they folks DO have a lack of common sense.

       

      look at how the current generation has developed..they don't have to think for themselves..sit and play video games..don't know how to spell or their grammar cause their phones will spell out the word for them after they enter a few characters but they still don't know the difference between their/there or wear/where for example.

       

      the lack of common sense and politeness is lacking and i get so disappointed when i have to leave the house and deal with some of those in the outside world..

       

      i am not permanently in a wheelchair or scooter (yet) but i do have to use one when i get to the grocery etc..and am armed for the comments.. if/when they come my way..  it's just uncalled for.. to be called lazy..that's such an insult..

    • Lynstace
      Jun. 08, 2012

      I have had MS for 30 year and am now secondary progressive.  It took me quite some time to learn to deal with the rudeness, but now, I just blow it off as ignorance.  We know the score and that's good enough for me.  You cant't fix "stupid"

      '

    • Dan and Jennifer Digmann
      Health Guide
      Jun. 08, 2012

      Thanks for your comment. Yes indeed, lazy is quite an insult. You have a great spirit and lets hope there are only good days in your future!

       

      ~Jennifer

    • Dan and Jennifer Digmann
      Health Guide
      Jun. 06, 2012

      Thanks for your comment, Muff. How awesome that you taught something to someone who should have known better, and that you did it with patience and grace. Way to go not letting her ingnorance spoil your day!

       

      - Jennifer

    • Lynstace
      Jun. 08, 2012

      I loved your response about someone taking on the MS as well as the scooter.

      We must have a sense of humor!  Cool