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Body Image and Lupus

© Karyn Moran Holton

Under the best of circumstances, most people will tell you that they're not happy with the way that they look. Some of them will only tell you that because they're being modest, or because one isn't "supposed to" like the way one looks, but most will be telling the simple truth: We tend to wish that we were taller/shorter/skinnier/more voluptuous/lighter/darker etc. However, the lupus patient usually has more issues with body image than the average person--Let's take a look at why, and what we can do about it.

One of the classic symptoms of lupus is the red, raised rash on the face, usually on the cheeks, across the bridge of the nose, and above the eyes--The infamous "butterfly" rash. This symptom is difficult to miss, and one of the things that lupus patients frequently hear is, "What happened to your face?" Yes, there are people who actually are that insensitive! Like we don't know that we look this way! (On a particularly bad day, I snapped back to one of those oafs, "I have lupus, what's your excuse?" Sigh! Not one of my finer moments!)

Oddly enough, sometimes the rash can make you look like you've been out in the sun, and I've often heard people saying in a pleased voice, "Oh! You've finally gotten some sun! You look great!" while I'm in the middle of a rotten flare and feel completely awful!

Another problem that lupians frequently need to deal with is alopecia, commonly known as hair loss. During a flare, we can lose literal handfuls of hair, leaving bald, red, rashy patches on our scalps. In its milder form, hair loss can occur in a general way, leaving hair thinner and more brittle. After a flare, the hair can start to grow back in a telltale pattern at the hairline. Experienced docs will look for these "lupus hairs" as evidence of a flare in the recent past.

Another issue that we commonly have is our weight. Yes, I know that most people have weight issues, but with lupus, these problems become more than what "most people" have to deal with! Lupus can cause unexpected and uncontrolled weight loss. While most people think that this is a blessing, it isn't. Not when your weight was normal to begin with and you go down from there, and you can't eat because you're nauseous all the time. Of course, unwanted weight loss can lead to a downward spiral regarding your self-image, because it adds to your "sick" appearance and people frequently say helpful things like, "Why don't you take a vitamin?" and "Have a milkshake once in a while--You look awful!" While these comments may be well-meaning, they are decidedly unhelpful!