February, 2012

Please Don't Call Me "Pretty"

Understandably, there are many people in my life who have difficulty figuring out how to behave around me. Of course, we all have fairweather friends whether we're aware of them or not. Most of these people have disappeared from my life by now. On the other hand, there are plenty of well-meaning individuals who want to be supportive, but genuinely have no idea how to go about it. These friends I try and have sympathy for, but I sometimes have a hard time because of the way this illness affects my moods. I get frustrated.

It's always a challenge to have empathy for someone going through a trying experience that is foreign to us. However, when it comes to these "invisible illnesses," it can be even more difficult. We are very visual creatures, and without any outward signs, it's even harder to ascertain how someone with one of these conditions must feel. We're predisposed to make certain assumptions when we see something like a wheelchair or a skin condition. We can't imagine the full scope of what the afflicted individual must go through without doing the same, but we form a very rudimentary idea.

On the contrary, without these visual cues, we are left entirely in the dark about their physical state. Sometimes it's possible to tell from bags under their eyes that they're having an especially rough day, but their physical appearance may have no correlation to their inner turmoil. They may appear perfectly healthy.

I've noticed that the number one response people have to this awkward scenario is to try and compliment the afflicted individual. Because I recognize the reassuring sentiment that motivates this behavior, I smile and say thanks, rather than explaining how this makes me feel. Now, I can't speak for all Lyme patients here, only myself. Depending on how I feel, the best-intentioned compliment may sometimes have the exact opposite of its intended effect.

For example, the absolute last thing I want to hear on a bad day is that I'm pretty. I know, this seems odd. After all, I would probably say the same thing while trying to lend a friend emotional support. So why does this simple statement cause my skin to prickle in irritation?

First and foremost, I don't exactly feel attractive most of the time. I'm weak and slumped over. There are bags under my eyes. My skin is pale and sallow. My lips are dry and cracked. My hair is unwashed and limp. When I look in the mirror on all but my best days, I see a sickly shadow of my former self. Therefore, my initial reaction is to question the sincerity of the speaker, not only in that instance, but also every other time they've complimented my appearance. I know that I don't look better than usual, so I know the comment is made purely to lift my spirits, and I begin to wonder when else this has been the case.

This is not the only conclusion I'll draw subconsciously. When I explain to someone what I'm going through, a response I get frequently is something along the lines of "but you still look so good!" What my friends typically mean by this is "I never would have guessed, because it doesn't show." One person kindly rephrased their comment to "you're so strong and beautiful to begin with, that even if you're not up to your standards, you're still more awesome than most of the population." That warmed my heart once it was spelled out for me. Unfortunately, this is not where my mind goes when I'm told I'm "still" pretty.

Instead, what I hear is "at least you're still pretty," as though my appearance were more important than my state of health. For your reading pleasure, if you so choose, you may insert a generic feminist rant here. Honestly, I don't think anyone that I know would openly elevate looks over health, but I do know many who feel as though it must be a blessing to be able to hide my disease. For many Lyme patients, it is. It allows them to shy away from political controversy. Others don't feel like they can tell their boss for fear of casting doubt on their ability to perform the job. Still others have more reasons why they need to keep up appearances and pretend they're not sick. I'm not one of them.

Aside from possibly a bickering match with my insurance company, I would suffer no repercussions from posting my entire medical history for all to see. This disease has already cost me my job and caused me to put my higher education on hold. I've tried to use these losses to my advantage and become more of an advocate, because I'm one of the few who can.

In my position, it's actually more beneficial when people can see my pain. When I had to use a rented wheelchair to get around Disney World, my dad tried to take pictures with the chair out of the frame. I had to explain to him that I'd prefer it if the world could see what I'm going through. I still don't think he really understood it, but he took the pictures.


This was not one of the days I could pass for healthy.

So what do you say if you're that friend who wants to lend a kind word, but are now terrified of bungling the job? Some of my friends, specifically poets, simply practice very careful phrasing of their compliments, like the one mentioned above. Others use little tricks to gauge my response before they say anything. For example, my mother asks first how I'm feeling. If I tell her I'm doing fairly well, she says "yeah, you look like it." If I'm not as positive, she talks about something else.

Perhaps the easiest method with me is to follow the one visual cue I give: my makeup. Although I was working (and am still licensed) in the beauty industry, most days I'm just too exhausted to care about a little mascara. The days when I can be bothered to put on my face and still have enough energy to venture forth from the house are significant. Those are the days when I want to impress, and I've actually put in work I'd like someone to appreciate. But on the days I crawl out of my cave bare-faced, please, don't call me "pretty."

©2012-2013 Lemon&Lyme
Questions or Comments? Email Ginger at ginger.lemonlyme@gmail.com