Tag Archives: frustrations

MS and the wrong thing to say

Sometimes I wonder if people living with MS are truly empathetic toward the people who share their same diagnosis.


So often I read rants from fellow MSers who condemn critical people who don’t have the disease because they,  “ . . . don’t understand what I have to live with because I have an invisible illness.”

They hate it when friends, family members and strangers throw out comments such as, “But you look so good,” “Maybe if you went on a gluten free diet,” or “I think it’s all in your head, and you’re just making up excuses.” 

As a person who has had MS for 15 years, these kinds of comments don’t even phase me. I know they’re coming from people who either care about me or from people are just plain ignorant about this chronic disease of the central nervous system.  

However, I’ve realized the comments that do infuriate me — and often cause me to lose sleep — are those that come from people living with MS who truly should know better. These comments litter many MS blogs and online discussion boards and ironically are coming from people who expect others to be respectful of their MS and the challenges they are facing.

  • “My dad is a holistic chiropractor-without him I’d probably be in a wheelchair!”
  • “I worried that I’d end up in a wheelchair.”
  • “That is actually a myth that people if diagnosed with MS end up in a wheel chair.”
  • “I’m afraid of becoming the person who’s ill, who might end up in a wheelchair, embarrassing and dependent . . . ”

Apparently they’ve forgotten about an important part of their MS population.

Just like that, these people unknowingly called out and undervalued each person living with MS whose disease took away their ability to walk. This essentially also includes every person who uses a wheelchair because of a disease, military combat wound, traffic accident, or any other related situation. Each circumstance was the result of elements beyond their control.

I want to remind each person who makes such comments that even though your illness is invisible, it doesn’t give you the license to make it insensitive.

I get it that these are very real fears, and people with MS who say they don’t have them likely are lying. Yet, when such insensitivity is socially acceptable, we as people with MS need to champion the shift in how people view life if and when they no longer have the ability to walk.

The reality is my wife, Jennifer, also has MS and hasn’t been able to walk in nearly 13 years. Yet, within that time she met me and got married, wrote a book, earned her master’s degree and has presented at conferences in cities such as Washington, D.C., Louisville and Philadelphia.

Not bad for somebody with MS who, “ended up in a wheelchair.”

What if instead of fearing life in a wheelchair, those of us with MS change our thoughts to hoping that we still could lead productive lives if we needed to use a wheelchair? This isn’t to sugarcoat the harsh realities of the challenges that occur in life with a physical disability. Jennifer and I live with it everyday.

I have relapsing-remitting MS, but I don’t fear that I one day may need to use a wheelchair. Jennifer has shown me everything that is possible even if someday I lose my ability to walk. Until that time, I will embrace that my illness is invisible and take it as a complement when people say that, “I look so good.”

I have shifted my focus, and I don’t need to live in fear or anger because my MS is invisible. I have taken control and have chosen instead to make my life with MS one that is empowering. Without or with a wheelchair.


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