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MS and Fighting Stigma

By Matt Cavallo

Most refer to stigma in terms of mental health. So, why is this important and why does it resonate with me? No one likes being labeled, but once a person is diagnosed with a chronic illness such as MS, you become stigmatized.

First, let’s define stigma. According to Google dictionary, stigma is “a mark of disgrace associated with a particular circumstance, quality, or person.” There have been many times since I was diagnosed with MS that someone has said to me, “but you don’t look disabled.” I fight hard to hide my disability because I don’t want the label of that stigma. I hide it at with my family, friends, and at work. Rather than acknowledge that something is wrong, I tend to say, “I’m okay.” 

That is the problem with stigmas. People think that I am weak or damaged because I have MS. They may think that I am not capable to work or be productive in society. Since people may have these assumptions, the person living with the stigma can start to feel embarrassed or ashamed. There are three types of stigmas and learning to fight them takes understanding why they each came to be. 

A public stigma is a common negative attitude to a group or trait. An example of public stigma is illegal drug use, where people may not seek treatment because negative ways in which society views people with addictions.

Institutional stigma deals with discriminatory laws, rules, or policies. An example of institutional stigma is that research showed that less funding is available for mental health. To address this stigma, President Obama signed into law the 21st Century Cures Act in December of 2016. One of the main aims of that legislation was to correct the institutional stigma by providing funds for mental health care and mental health research. 

Finally, there is self-stigma. This is when a person feels shame or becomes secretive about a trait or circumstance. People living with chronic illness often live with that stigma. I started blogging about MS in 2008 and write about many experiential topics related to chronic illness that people are uncomfortable talking about. As a result, some people may not like and share my blog as they would other articles that talk about topics such as fashion or sports, even if they connect with my experience. Despite feeling they want to share, doing so makes them vulnerable to the stigma of chronic illness.

People should talk about illness and share experiences, but they often shy away from those conversations because they do not want to be thought of as weak or damaged. So, how do you fight stigmas?
  • Recognize that you are not to blame for your diagnosis. I used to think that maybe if I had done something differently or made better choices, that MS would not have happened to me. There is nothing you could do to prevent MS, so don’t shoulder the blame.
  • Learn more about MS from experts and others living with the disease. The more you learn about MS, the better equipped you will be to answer stigmatized questions.
  • Don’t go into hiding. Hiding and keeping secrets is isolating behavior. By doing this, people will worry and start asking probing questions. They will also may assumptions that will increase the stigma.
  • Speak up about your MS and share with others. The only way to remove a stigma is to discuss it so that it is no longer a disgrace. 

You have influence over how people view MS. Be strong and let them see that you have MS, but MS does not have you.