Not ______ Enough

I will never forget the first time I felt “less than.”
I was onstage and in costume, ready to perform for the very first time at the local Greek festival. Our dance troupe director was welcoming the audience and explaining the origin of our opening number. The girl standing next to me in line started to ask the dancers in the immediate area “how much Greek” they were. She went down the line.

“I’m 100%.”
It was my turn. “I’m half Greek,” I said.
The “100%” crew proceeded to exchange high-fives and accolades with each other.
I had just turned five.
We see one-upmanship everywhere, but it astonishes me even more when it happens among “circles” of people. We see it within various ethnic or racial groups—not black enough, not Asian enough, not Italian enough. It happens within different religious groups, too, when people challenge each other’s piety, and within the LGBTQ+ community, when some don’t feel “queer enough.” We see it when a musical artist or celebrity passes away, and “true fans” call others “bandwagoners.”

When a person who expresses a fondness for an athletic team, comic book character, video game, or movie franchise, their dedication and aptitude is put to the test by other fans. Men aren’t “man enough” if they show their emotions. Vegetarians and vegans judge each other’s level of commitment. Body builders, feminists, artists, the list goes on.
We all do this to each other to some degree. But for what?
I’m especially shocked and saddened to see this unfortunate phenomenon within our very own MS community.
“You’re weak because you take medication. You’re poisoning yourself. Yoga and diet is just as effective.”
“You’re too negative. You just want attention and for everyone to feel sorry for you.”
“You’re too positive. You’re blind to reality.”
“Your symptoms aren’t that bad. You could have cancer.”
“You’ve only had MS for a short time, so therefore you’re naïve and are behaving all wrong. You don’t know what you’re talking about.”
“But you don’t look sick.”
We, as people living with MS, often hear hurtful, judgmental comments from people around us. Sometimes our doctors can be insensitive. Sometimes we get glares and accusations from people when we use our disabled parking placards. Some of us get denied social security disability insurance, even if we wake up in constant pain, unable to move or lose our eyesight.
And we don’t appreciate it.
So if it hurts us so much, why do we, as an MS community, do these things to one another when we’re all in the same boat?
Our community should be safe space to share our own experiences and learn from others, without it turning it into a competition. The ways in which our disease manifests vary from person to person, from day to day. We know this. So why can’t we respect that fact and allow and encourage each other to cope in our own unique ways?
For me, the most frustrating thing about MS is this:
My body... MY body, is attacking itself.
When we MSers turn on each other and try to make others in our community feel less than, we self-attack.
Just like the disease we are all trying to fight.
We become MS.
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Cat Stappas

Cat was diagnosed with multiple sclerosis in 2013 and writes about her experiences in her blog, It's Only A Bruise. She hopes to make the dark corners of the internet a little bit less scary for both the newly and the long-time diagnosed with some honesty, positivity and — sometimes — some tongue-in-cheek humor. You can read her blog here and follow her on FacebookTwitter, Instagram and YouTube.

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  • Regina   Feb 20, 2018 6:41 PM
    I know what you are saying. I am currently an MSer that does fairly well. I try to pass on what I have done, in conjunction with medication, to others in my life sphere. However, I find that what I see to be so vitally important is not valued by the recipients. They wish to do what their doctor says and no more. This frustrates me to no end, but I have come to the conclusion that this is something that truly bothers them. MS is too hard, and we are all different. I have had to stop giving advice. MS is just too hard!
  • april9517  Feb 22, 2018 9:31 AM
    I so agree with this, I have noticed throughout the MS world, MS shaming. Shaming those who dont eat well, shaming those who dont take meds, shaming those who do take meds, its never ending. We all have the same disease, but it is so different in everyone and everyone is so different, some people like to stay positive and some feel the need to be negative to cope. We should all be boosting each other up not trying to tear eachother down from our high horse. Im glad others can see this as well. Thank you for sharing!
  • lveglatte  Feb 22, 2018 11:37 AM
    Well said, Cat! What works for me may not work for you. We need to support each other, not criticize each other.
  • Avatar
    ISLP2  Feb 23, 2018 11:58 AM
    Hello Cat,

    Thank you for your blog post.

    Since my diagnosis twelve plus years ago, I've drifted in and out of various MS discussion sites and meetings. I've left more than one because of heated arguments among groups about how to minimize the effects of this cursed disease.

    My attitude is if a strategy works for someone with MS, good for them, even if I've tried the same strategy to no effect.

    Many people want to tell us how live our lives with MS. I have been making my own decisions about living my life since I moved away from home and my mother years ago. I try chalk up their insistence that I change my life to a sincere desire on their part to help me cope with MS.

    Even keeping that in mind. I agree that many of their suggestions seem more judgmental than helpful.

    Best regards,
  • Shannon   Mar 1, 2018 10:15 AM
    Unbelievable, Cat!
    I felt like you were reading my mind! Phenomenal job on your blog/post.
    Happy March to you, as well!
    Love, peace and happiness,
  • Kristen   Jul 18, 2018 7:24 PM
    So true. I attended a MS convention about a year ago and had a fellow MS'er, a sweet woman around my mothers age, make the comment well you don't look sick. I must have had the biggest look of whaaa?!?!? I began having symptoms over 30 years ago, officially diagnosed in 97 by going completely blind and lost all feeling on the right half of my body from head to toe in the matter of minutes. Over the decades I have re taught myself to walk, talk and everything else to where I look perfectly "normal" 90% of the time. I permanently lost all feeling throughout my body about a decade ago which took me over a year to get back to "normal" so this woman only saw me post rehab. I told her that it's probably due to my background as as dancer that I am still quite agile. She was using her scooter most of the weekend while I left mine at home along with all of my other walking aides, so to be judged by a fellow MS sufferer because I was better at faking normalcy truly blew my mind. She was fairly newly dx and seemed to still be in the early stages of accepting her dx so I just chalked it up to that. But when a woman old enough to be my mother tells me I am so lucky to be, I said I would have been happy to have made it into my 60's before getting dx instead of 20 at dx, going blind for the 1st time at the age of 8 or 9 with dozens of other misdiagnosed symptoms for years till my dx attack at 20. She was quite sweet the remainder of the weekend but if based on 1st impressions... lol
  • Tammy Balbinot   Jul 19, 2018 8:50 AM
    I have had friends say to me "I know I shouldn't complain, you've got worse problems than I do." To which I respond with "Please do NOT minimize YOUR own problems because you're problems are just as real, just as important and upsetting to you as mine are to me. So when you say that you are actually minimizing your own problems, which are just as valid."