Do We Have Stigma With MS?

Stigma or Misconception with MS

Stigma Is Seen In Some Diseases, What About With MS?

Is there stigma associated with the disease Multiple Sclerosis? Stigma, (a noun) is a pre negative thought of a person, place, or thing. We see it with other diseases such as HIV/Aids and Diabetes type 2 such as they have done something in which to cause their health issue. With all my years dealing with MS, I haven’t seen or heard of stigma in relation to our disease but there is a great deal of misconceptions.

It seems like most people have heard of MS but not quite sure of what this means unless they know someone who has it and often will believe that all of our symptoms and abilities are similar but this is NOT the case. Most people when diagnosed often ask if this means they will end up in a wheel chair and/or totally disabled. Of course this is not true either. Multiple Sclerosis is known as the “SNOW FLAKE DISEASE” because everything is based on how many lesions we have and where they are located. We all may have similar symptoms such as fatigue, muscle spasms, body/extremity weakness, etc., but we may all not experience pain, have optic neuritis, migraine headaches, bladder issues, or other symptoms. Some are able to work a full time job while others are disabled, in a wheel chair or in a bed, and need someone to provide help with daily care activities.

I am sure though we have received comment/s which were not correct such as: “You look great, you don’t look like you have MS”, “I know someone with MS and they can still work why can’t you?”, “Are you using your disease to get out of doing __________?”, “Why can you always do what you want to do, but you can’t do what I want you to do?” are just a few examples. Have you ever been accused of being drunk or high on pain pills because your speech is slurred or you are walking funny? We even have people who get aggravated with us for walking too slow, moving too slow in a checkout line, or parking in a handicap place even though they don’t see the cane or wheelchair. I believe for me is the comparison comments which are hard because it usually makes me feel like less of a person to whom they are comparing me to.

So what do YOU do when this happens to you? Do you ignore the comments, make a snide reply, or take the time to explain what MS is and how it affects us all differently? What I usually end up doing first is questioning the person to see how much knowledge about MS they actually have. Next I either correct inaccurate information or thank them for the understanding they already have and add any relevant data needed to help them understand why we are different from each other. I allow time for questions to be asked and provide websites for him/her to visit to get a clearer picture of what I am saying. Most people aren’t trying to be mean with their comments just ignorant to how our disease works.

Then there are just fools who are going to say or do something hateful because of the type of person they are. You know these types, never really ever been sick and they come before anybody else! They don’t want to hear the truth and would probably argue with you if tried. Most often when this happens I just smile, even though I might be angry, and tell them I hope you never have to experience what I do each and every day and I will pray for their attitude to change.

Stigma is a probably not part of our experience but a great big yes to misconceptions. Knowing this though needs to provide us some insight to others living with other diseases and not be quick to judge or to show stigma. Nobody living with any disease wants to deal with nasty comments. My motto is not to judge unless you have walked a mile in their shoes, because you can’t know what kind of issues someone is living with.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.