Living with MS: Overcoming Self-imposed Stigma

Patient Expert

Have you ever found yourself choosing to NOT tell someone you have MS because you were concerned that they would suddenly think you were not capable of something?   Have you avoided using a mobility aid in public because you felt like it was a 'crutch'? If so, you may have been self-imposing the negative feelings associated with a stigma.

Social stigmas are an unfortunate part of our society.   A social stigma is the extreme disapproval of a person or group of people based on a perception that something sets them apart from what is 'normal' or socially acceptable.   Social stigmas exist around mental illness, physical disability, disease, race, education, religion, ideology, and more.

Removing the stigma of MS.

One theory behind the many efforts to raise awareness of multiple sclerosis is to begin to remove the stigma of MS.   By educating people about the disease, we (those affected by MS) hopefully can show how our differences caused by MS do not make us so different after all.   In concert with that, increased awareness and knowledge may help others to recognize that our differences, whether visible or invisible, do set us apart from the average person and necessitate special considerations.

"I'm not drunk; I just have MS."

This phrase is commonly used by people with MS to laugh at the effects of the disease.   But it also seems to establish that there is an unspoken hierarchy amongst stigmas.   Apparently walking around in an uncontrolled drunken manner (or stumbling while hammered off your ass, so to speak) is less acceptable than walking on the wobbly legs of someone who has impaired balance, coordination, or strength.   In essence, the phrase is emphasizing that 'I'd rather be perceived as physically disabled, than as someone who doesn't know when to stop chugging alcohol.'

"I'm not stupid; I just have cognitive information processing difficulties due to MS."

Ok, that phrase, I made up.   I've never seen it on a t-shirt or poster.   But based on many conversations online, it seems that people who experience cognitive difficulties become frustrated with themselves and may internalize phrases, such as the one above, to reassure themselves.   For me, extreme heat seems to 'melt my brain' and I find myself having difficulty thinking things through or making decisions.   I know that I've not suddenly become 'stupid', but that knowledge doesn't make me feel any better in the heat of the moment.

Turning the tables, or "excuse me, I need to sit down."

Living with MS becomes a lifelong exercise in adapting, adjusting, and accepting.   Eventually, many people with MS or other chronic disease learn to not be concerned with what others may think.   However, what if you WANT others to think or believe something about your personal experience so that you can use that belief to your advantage?

At some point, I learned that when I travel by train (on Amtrak), I have an easier experience if I bring along my foldable cane.   Using the cane not only helps me to navigate big city streets at my destination, but also serves as a type of visible badge of a physical limitation.   At Union Station (DC) I use it to go past the people standing in the waiting area to find a chair near the door to the train tracks.   Without the cane, people are extremely reluctant to let me step by and have even given some rather harsh looks.

People do not suddenly realize that I have MS, and they don't really need to know.   But it is helpful to rely upon societal assumptions that someone who uses a cane is not as capable of standing comfortably for extended periods of time.   Unfortunately this tactic doesn't work as well at Penn Station (NYC) due to the design of the station.   Seating is separate from the boarding area where people line up (or rather gather as a mob) at the appropriate time.

Using the cane in public is one way I've made my MS more visible in addition to the support it provides. However, I do find that I'm more cautious about using it when I'm interacting within my social circle.   Somehow when I'm around people I know, I become more self-conscious and don't want to appear weak or disabled.   But I know that this is fault in my own perception and that it doesn't make logical sense.   But when we're talking about self-perceptions and emotions, logic takes a back seat.

What stigmas have you encountered in living with MS?   What have you done to overcome those perceptions?

I'm still working on how I perceive myself.   And like MS, it is an ever-changing challenge that requires adaptation, flexibility, and acceptance.