What SHOULD I Look Like? The follow-up question to “You Don’t Look Sick”

It is no surprise that those who have been diagnosed with lupus will inevitably be told at some point, “You Don’t Look Sick.” As sweet as the attempted nicety may be, often it’s received more as a backhanded compliment to the person suffering with the illness. Don’t get me wrong, it is great to be told from time-to-time that my outsides don’t match the hot mess of my insides. However, somehow, someway, it is incredibly invalidating. It makes one feel like a counterfeit. A fraud. That there is a right way and a wrong way to wear sick clothes and you are rumpling the suite. And not only are you wearing your sick clothes “wrong” but you are cheating the system as well. You can’t be sick and have fun, be social, or have interests and hobbies. You can’t have it both ways. Furthermore, you can’t be sick and do your hair, or trim your beard, or wear makeup or even wear “real” street clothes. “When you are sick, you must look sick….or you are not truly sick” – sayeth the world.

This led me to think, “What should I look like, then?” In response to that question, and in honor of all the sick girls, like me, who wear lip gloss and are made to feel guilty about it, I decided to pen what I like to call, “The Sick Girl Soliloquy.”


The Sick Girl Soliloquy


What should I look like to you, my friend

Should I wear pj’s, yoga pants and not be on trend?


What should I look like to you, my boss?

Should I not come to work, no matter what the cost?


What should I look like to you, my love?

Should I not be touched, not be hugged?


What should I look like to you, my son?

Should I stay home, while the rest of you have fun?


What should I look like to you, my sister?

Should I let my life pass me bye and say I didn’t miss her?


What should I look like to you, a stranger?

Should I judge you as you did me or show you favor?

*guys this includes YOU too 🙂


More and more, I feel like lupus individuals are being forced to allow their illness (or illnesses) to dictate not only what they look like, but how they present themselves to society.  As if it isn’t enough to be constricted by pain and fatigue, we have to hand over the reigns of our physical appearance as well.  Why should we give lupus the right to control our confidence, our image, our self respect?   Why should we give lupus the power to vanish us from the land of the living?

Sadly, we as a society are quick to make snap judgements about who a person is and what they represent – in a few seconds.  For example, if one sees a person in a wheelchair, he or she immediately assumes that person is sick or injured.  Usually that memory establishes a permanent assumption which allows the onlooker to label him or her “sick” or “disabled.”   

On the flip side, when one sees a person at the park, taking a nice stroll with friends, he or she would assume that person is healthy and in a state of well-being.  When the same onlooker sees that person the next week in a wheelchair, or in a hospital bed, it is confusing.  “But, they didn’t look sick when I saw them the other day” would probably be the exact words he or she would utter.  With lupus, the baseline of “wellness” is in a constant state of flux, and due to the variance of illness, comes a variance of tolerance from the onlooker.   The onlooker did not see the transition from the park to the wheelchair, so in his or her mind, they are left to fill in the gaps of what he or she considers the social norm.  Most of the time, sadly, the gaps are filled with negative thoughts and assumptions.  Words like “She/he must have been faking then” or “She/he must be faking now” or “She/he couldn’t be that sick, if she/he looks this way…” float in a person’s mind like dandelions in the wind.

So, once again I ask.  What is “sick” supposed to look like?

Lupus comes with good day, bad days, and in-between days.  You can have lupus and be in a wheelchair, and you can have lupus and enjoy running. You can have lupus and have a butterfly rash or you can have lupus and have clear skin.  You can have lupus and have shiny hair and you can have lupus and have no hair at all.  Sometimes lupus is the “invisible illness;” sometimes the wolf is staring at you right in the face.  

After having lupus for 25 years now, I have seen and heard it all.  I have been told that I “offend” other sick people because I wear makeup and do my hair.  I have been told that I need to “tone down” my positive attitude because other people will be depressed by my good mood.  I have been told before that I can’t go to this concert, or walk this 5K, or fill-in-the-blank because I am giving others the wrong idea of what living with a chronic illness is all about.

The thing is, I have been told a lot of things about how I should act and how I should look.  It took me a while to process that people’s comments at the end of the day were (and are) really not about me.  It’s about them and their own fears and insecurities. Sometimes, people are afraid if I am a representation of what “sick is” and I look like them, that means there is no separation between them and me.  And that scares people.  And when people are scared, they say things out of fear or they say something that is wrong or hurtful – that they don’t know is wrong or hurtful (that’s called unconscious incompetence).

After coming to this realization, it made me think.  And after thinking it made me solidify the notion that I am not responsible for other people’s thoughts, words, opinions and judgements.  I am only responsible for my actions and my thoughts, words, opinions and judgements.  Furthermore, I (like the rest of the human race) are given a finite amount of days on this earth.  Days that I believe are not to be wasted.  Days that I would prefer not to be stolen by any label, image or stereotype my illness perpetuates.  

So what should I look like then?

A girl on a mission.

A mission… to live.

And, I hope, if you are reading this and you have lupus, you’ll join me on that mission too.




Author:  Kelli Roseta

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