Skip to Accessibility Tools Skip to Content Skip to Footer
MS stories

My MS Daring Disguise

Picture this…a warm smile, a coy grin, lovely hair well-coiffed, flawless make-up, and a figure and form sporting casual chic or dressed to the nines.

Our life with Multiple Sclerosis has become a dichotomy of sorts. The inside of us does not always match the outside, and the outside does not always match the inside. This experience of an unwanted contradiction of being seems to plague us incessantly.

There are many instances in which a person, who happens to glance my way perhaps while sitting at a restaurant or movie theatre, would not be able to immediately perceive there is something “different” about me. No, not at all. That is, not until I stand up quite gingerly and slowly, and I begin to walk at a snail’s pace with careful steps. Yes, and then as I clutch my companions arm or hand to guide me. This because I can’t see clearly and blurry vision hinders my mobility; or as I step forward my legs become wobbly due to extreme weakness; or I sway to and fro because I’m dizzy due to vertigo and have no balance. Only then, do they, both strangers and perhaps some family, realize my outward appearance is a disguise.

So very familiar to us is the phrase we often hear, “You look so good”, sometimes predicated by an oh, a but, or both words thrown together. Did I inadvertently or did I intend to bring this compliment upon myself from those that know I have MS and even from those who did not? Well, I ask, isn’t it my right to look as good as I can and to be my personal best regarding my appearance? Dare I? Should doing so somehow minimize to those concerned or curious, my genuine discomfort from the neurological malfunctions going on inside my body that people cannot see? Is it not an important and a worthy point to exercise control to feel good about myself? Even about something as “superficial” as appearance? On those days that I don’t want to wear sweats and want to look especially nice, can I admittedly, indulge myself? Yes I can.

After all, during the MS experience, we have lost control over many things. Some, temporarily others permanently. Some external, some internal. There are obvious ones like our mobility, dexterity and vision. Even more include an occupation, independence and the ability at times to think clearly and to have peace of mind. Frankly, even our bladder control is on the list.

So, here we are, caught in the conundrum of a perpetual authentic disguise which we, at times almost dutifully, wear very well. This begs a question (or several) I must ask because I am curious. First, how am I supposed to look? How do they want me to look–disheveled, unkempt? Would that make people understand how absolutely difficult it is to get up every day and painstakingly prepare my mind and body and for activities to mingle in a world that only sees and hears what it wants to anyway?

Well, I am not going to do it. I won’t succumb to preconceived ideas of how I should or should not look with MS. I don’t have to. I will not give away my power to others to determine or diminish my self-esteem by replacing my judgment with their fickle notions.

Rather, perhaps I’ll just take my druthers and continue my aptitude for self-care and well-arranged dress, with a dash of vanity, allowing them to say with all intended compensatory sentiment or with the utmost sincerity, “You my dear, look simply marvelous!” And if I choose to, I will continue to smile.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Candy
    4 years ago

    MS. Lexine I’ve never been so touched by a story. I feel the same way. After my latest hospital stay, which I left on January 2, 2015, I’d my fill. After not being taken seriously unless I was hospitalized and looked like “road kill!” So I gave them what they, being the doctors, wanted. I showed up for follow up appointments looking just as bad as felt!! That took more of my pride than the first time I needed my wheelchair in public. Even more shocking, the completely different response I received. I have known these doctors for almost 2 years, since we moved from our CO home. As most all of us understand, I met them before my neighbors. It as though they were seeing ‘the real me’ for the first time.
    I’ve always taken pride in my appearance. Is there an unspoken rule that says in order to have a serious illnesses you must look as bad as feel? I would’ve never believed this had I not experienced this myself.
    It’s not the general public that judges us by the way we look, it’s also our own doctors.

  • Lexine Darden author
    4 years ago

    Candy, the fact that you can relate to my story is proof that MS and its’ symptoms are misunderstood by so many, even docotrs as you experienced. We can only hope your experience proves to be a learning event taken to heart and mind by that physican, so that their present and future MS patients do not experience the frustration and perhaps delay in treatments that you did.
    Thank you for shaing your story with me!
    Candy, I lnvite you to visit my Facebook page Embracez, where I share my perceptions and feelings about dealing with MS at .
    All the best to you.

  • Malar
    5 years ago

    True MS doesn’t have us. That is why we challenge and push ourselves to feel good and great of ourselves. Nobody can see or feel the fatigue inside. Are we fooling us or the others? Neither.

    Thanks for sharing.

  • north-star
    6 years ago

    I like it when I meet someone and they don’t know I have MS until I get up and move around. Ha! Fooled you! Dressing well helps me look normal when I’m sitting down.

    Looking polished and well put together is a good thing. You no doubt serve as an example of someone who is not lessened by MS, who hasn’t lost her style and creativity. A strong person. “Continuing to smile” is a good strategy. So is looking good.

    And it’s an opportunity to spread a little wisdom about MS if someone’s awkward comment or compliment makes you uncomfortable.

  • Lexine Darden author
    6 years ago

    Yes, we certainly do alot of fooling people don’t we? It sounds as if you have not lost your style and creativity either. As we often say, we may have MS, but MS doesn’t have us!

    Thank you for sharing with me North-Starr (love that screen name and all that it implies.)

  • Poll