Help! Now that I have lupus – I hate how I look!

Even though the lupus experience is different for everyone, there are many common problems and concerns that come up. In the Help! series, I’ll be writing about some of most common lupus complaints that I get.

Scary Mirror

Photo credit: OaklyOriginals via Flickr Creative Commons

Whether you’ve considered yourself “pretty” in the past or not, once lupus enters the picture your appearance will start to change. And, odds are likely, it will suck. Aside from the symptoms and the medications, coping with the changes in your appearance will the one of the hardest parts of coping with lupus. Of course, if you’ve had lupus for years and still look like you did before your diagnosis, that is fabulous.

But here’s what my experience has been:

I’ve always been a chubby kid. I had pain and fatigue issues very young (so young in fact that I literally have no memories of what the hell ‘normal’ ever was), so being very active was an issue. And yes, I know that weight gain is a huge gray-area issue that combines enough factors to make your head spin, but this post is only about the lupus-related changes to the body. I was in pain constantly, but I looked pretty good and always appeared to be in robust health, so people always attributed my weight gain to laziness. I was often teased about my weight, even though nothing I did changed it.

Once I was diagnosed and started medication, my pain was better, but my appearance started changing. With prednisone, I puffed up even more. Losing weight was tough as a kid, but it became night impossible and I kept gaining, slowly but steadily all through high school, college and my early 20’s. Then, in 2007, when I had a super-mega-flare that demolished my kidney function, I was put on really high doses of the pred while my doctors tried a year-and-a-half course of Cytoxan infusions to try to save what was still fucntioning in my body. This was one of the hardest periods of my life. My hair fell out. I was 25 years old and swelled up to 230lbs, the heaviest I had been. Between the weight gain and the bloating from medication, I swelled up so fast my skin literally tore under the pressure. Normal stretch marks are bad enough; try having them over your whole body from your neck down to your knees. I felt like – and looked like – Jabba the Hut for the better part of a year. When I started tapering off the cytoxan and prednisone and started losing a little weight, the relief I felt at being “me” again, was tremendous.

When my kidneys finally failed in 2013, I went through the whole thing all over again. I was so swollen with fluid that none of my shoes fit. None of my clothing fit. I felt like the Stay-Puft Marshmallow Man, sans snappy sailor outfit.

Each major health crisis in my life cause radical changes to my body and appearance. During those times, I fairly snarled at anyone trying to take a picture of me. I was an emotional wreck. I felt like all the failures of my life had been permanently branded on my skin. I felt utterly unlovable. I was a hot mess.

But it wasn’t about vanity.

How we look is part of our identity, part of that package that’s labeled “self”. As babies, we slowly start defining our world by what we see, and we first gain an identity when our parents show us our reflections and we make the link that the face in the mirror is us. When you wake up and see a vastly different face and body in the mirror, it’s like having a rug pulled out from under you. You don’t feel like “you” anymore – you feel like some bad parody sketch. And, unlike so many of the more invisible symptoms and problems that come with lupus, when your face and body shape start to change, everyone notices – and everyone has a reaction. You might have to deal with people now giving you advice on how to eat, what to do to lose the weight (of course with no understanding of what’s going on), commenting on your clothing or hair (“just put on some lipstick, you’ll feel better!”) and on, on, on. Yes, a lot of them will sincerely be trying to be helpful – but it won’t be any less annoying. And don’t even get me started on the added impact of all the societal bullshit that happens about weight and appearance; that mess would take a dissertation to even begin to cover. Whether directly or indirectly, we’re all raised with the reinforcement that your appearance often equals who you are and who you are seen to be by the world. And when you can’t control that, it messes with your sense of self, your confidence, your self-esteem and your willingness to keep fighting.

What can you do?

While I’m all about taking control of your life, fellow lupies, it’s equally important to let go of things that you can’t control. If lupus is changing how you look, your options are going to be limited.

First – and I’m putting this in a little paragraph of its own so you don’t miss it – don’t freak out. If you start making decisions from an OMFGWTF?!!-frame of mind, it won’t end well. In the end, it’s important to weigh your feelings about your appearance against the health and function of your body. If you’re tempted to stop your medications or go on some crash diet or try an alternative treatment in order to change your looks, please talk to your doctor first.

Health comes first. Sorry, but drinking water and eating well is not going to magically turn you into super-model material. However, downing sugar drinks and eating fried chicken every night will not help either. Even if you hate the way your body looks, have some compassion for it – it’s under as much stress as you are. Treat your body well and give it the nutrients it’ll need to cope with the medication – and hopefully recover from it once you’re off.

Talk it out. I’m a big fan of journaling. A journal is the friend that’s on-call 24/7 and will never get tired of listening to you. Therapists are also your friends; it’s not a bad idea to see one no matter how well you think you’re coping. And while the internet makes a huge portion of support groups, it’s also really important to remember that these groups can also backfire, providing bad, or dangerous advice.

Remember, you can still look good. If you’re going to use the internet for anything, use it to look up makeup tutorials and dressing guides and make the best of however you look at the moment. There are so many tutorials on how create illusions with makeup, you really can minimize some of the changes lupus can cause. Or, take it as an excuse to explore a new style altogether and go as wild as you please. One of the reasons I learned how to alter clothing was to keep up with my changing body shape – but it also gives me a chance to have more fun with my clothing and experiment with my style. And being able to tailor my clothing to fit me better also helped me look better, which helped keep my spirits up during the course of my treatment.

How has lupus affected your appearance? Let us know in the comments!


6 thoughts on “Help! Now that I have lupus – I hate how I look!

  1. OMG!!! Your writings could be directly from me, Gwen. Being 51 years old, I have this bi-polar experience going on with how I look – Look ok, Hate how I look, wish I could turn back time, and back and forth, and then there is – I am 51 years old, been through a boat load of crap the majority of my life, you don’t like how I look, DON’T LOOK AT ME!!! (I still get really paranoid when people stare, or when I am out in public)

    • It’s rough. I’ve had my body shape change on me, like 3 times over the course of my life – so I’ll wear the same outfit, but suddenly have it look completely different. So times I feel totally self-conscious and other times, I’m happy to rock my scars. Thanks for sharing Gwen!

  2. Awesome post! I flared badly this summer and the prednisone puffed my face right up. I’m down to 5mg now but it still hasn’t gone back to how it used to be. My friends always tell me its not noticeable but like you mentioned, it’s all about your identity and it’s really frustrating to not recognize yourself in the mirror or in pictures. I often try to weigh my health against the side effects but it definitely gets hard. You’ve had such a hard battle, thanks for sharing!

    • Congratulations on getting down to 5mg! After about 7 years I’ve finally been able to get there myself. It might take some time, but I’ve got my fingers crossed that your puffiness goes away.

  3. My complaints are similar, although it is mostly my feet and ankles, I can’t wear cute shoes. I am naturally thin, but when I swell, I look like I am pregnant and the rest of me is a stick. Hard to explain that one away. Tiny pants, balloon shirts. I try to ignore the rashes on my face, as well. No amount of make up covers that. I just adapt, best as I can. I will agree, talking about it and journaling are key to keeping a sane mind.

    • I’ve gotten the the pregnant bit more than once myself – it sucks double when the medication’s made someone sterile. I’m a firm believer that cute shoes are a right and a necessity – have you ever checked out Crocs? You might know them as those clunky rubber shoes that nurses and Mario Batali tends to wear? I can’t wear heels or any shoes with hard soles, so I’ve been wearing these for years. The actually make a lot of cute models – flats, wedges and boots. The website comments are actually helpful too, since these shoes don’t “break in” like normal ones.

      You’re doing the right thing Michelle; thanks for sharing!

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