I’m not really recognizing myself in the mirror these days. The months of meds are starting to take their toll, and the “moon” face that often accompanies high doses of the steroid prednisone is now full-fledged and looking back at me.
I just went from the thinnest I have ever been, to rounder than I have ever been and it’s hard. I’m not going to lie. It’s really hard. I realize it is saving my liver. I realize it has kept me out of the hospital. I realize it is all very necessary right now, but dammit if it’s not really, really hard to LOOK like this round-faced sick person. I was just buying those really cute boutique clothes I usually don’t fit into. Like- just a few months ago. I liked that.
It’s funny what illness does to your head. You go from just wanting to feel good, to just wanting to live normally, to just wanting to LOOK normal…which in the grand scheme of things should NOT be important. But when sickness robs you of so much, some days you just want to feel pretty.
Lame. I know.
But when your whole life is upside down, and you don’t even feel like yourself in your own skin, feeling pretty really can work wonders. And right now I do not feel pretty. I do not feel like me. I do not feel like a woman who is desirable or wanted or hot or even slightly cute.
I look like all those sick people at the hospital, hopped up on steroids, round cheeked and fighting a battle. And I can talk all I want about how what I look like right now does not matter, so long as I am winning…but I’d be lying.
It does matter.
I care.
And I know I shouldn’t.
I just want me back in so many ways, and feeling fat and ugly robs me of even more dignity. Even MORE humiliation from this crap ass disorder that keeps taking so much.
I know it won’t win. I know it is temporary. And I know I will get back to being myself. But damn if I can’t stop thinking about how I will cringe as I see people I have not seen in a while. How I will cringe when we look at photos from our family recovery retreat planned for February. How I cringe as I try to do my hair that is thinning, how I cringe as I try to hide the dark circles under my eyes, how I cringe as I try to fit into pants that fit only a few weeks ago.
Lots of cringing going on here, because I feel so damn ugly. So not myself. So very, very, very round.
But then, as always, my support system props me up. And reminds me to shut off that part of my brain.
My husband texts me to tell me I am, and will always be, his beautiful bride.
My son pets my round cheek with his soft hand to tell me he likes me better this way, because my smile is bigger.
And I exhale, and try to remember it does not matter.
What matters is I keep winning.
Winning is the prettiest of all.
You are beautiful.
Smart. Funny. Courageous.
But, most of all, beautiful.
You are beautiful Erin. You always will be. I love you so very much!
you are beautiful-I love you for your brutal honesty
If it’s any comfort at all, I think you are beautiful. Absolutely beautiful.
You are beautiful, even when you don’t feel it. But, I hope you feel it again soon. Until then, you’re just going to have to trust us.
You are beautiful, Erin. I know how much illness and medicines can fuck with your head, but I still see you as my hero in all of this mess.
#suckit Lupus
See, and I never you before, but I think you are beautiful. And yes, Dear. Win first. The rest will come
Yes, this part is hard…it sucks how much of our self-esteem, our feeling GOOD, is wrapped up in that reflection in the mirror…but you ARE beautiful, and those pictures? You’ll one day look back at them in triumph, not cringing.
Your smile is bigger and so he loves you more. My heart is melting!
You know, my sister, was a lot like you in the way that she always looked cute and was always in shape naturally.
However, she spent a lot of time worrying about losing 7 pounds, 5 pounds, just 2 more pounds, etc…
As she was dying, at 49 from Cervical Cancer, and weighed maybe 90 pounds, she looked at my sister and I and said, “Please don’t worry your life away thinking about weight. Love yourself as you are.”
I am a far cry from her natural beautiful shape and it was easy to spiral into self-hatred but in honor of her, I no longer do.
What I see in that picture? Courage, fierceness and beauty.
Side effects suck, but they don’t stop you from being amazing and beautiful. I’m so glad that you have so many people rooting for you & giving you support from near & far!
You’re alive and you are on the road to recovery and health. That makes you fricking beautiful to me. I’m sorry this is so very hard for you and I wish I could help. Just know that I will adore you through the thick and the thin and I’m rooting for your recovery always. xo
You’re just as gorgeous as ever!
Erin you still look just beautiful. Really pulling for you to feel much better soon.
You will always be my beautiful friend and sister…you are one of the most amazing and strong women I know. Remember…and this too shall pass.
xoxo Bethany
“I care. And I know I shouldn’t.”
Bullshit you shouldn’t. This isn’t some noble quest hon. It’s okay to feel pissed that you look in the mirror and someone looks back that isn’t like the you in your head. It’s one more craptacular aspect of chronic illness.
I got really (really) candid on Jessica Gottlieb’s blog the other day, because it’s hard as hell every time I meet someone knowing that they think that my weight is just a result of ‘poor willpower’ or ‘not trying’ instead of fighting like hell and taking a bunch of drugs that all help me get closer to normal, but all have the side effect of weight gain, insomnia (which doesn’t help) and bloatiness.
I’m guessing right about now you have some inkling how hard it was for me to come meet you in person the first time in Boulder – because you are beautiful and a far cry from being fat or ugly even now.
But you know something? It turns out that there are good and bad days with even this too. You will have days you cry because you see a recent picture, or you catch your reflection in a mirror when you don’t expect to. You will also have days that you feel freaking *awesome* compared to those days. Your hair won’t be trying its best to do an impression of your 2nd-grade-school-picture chaos. Your complexion will be a little glowier. Your smile will distract from any less-than-perfect chin line. And you’ll think “dammit – why can’t today be the day I see everyone?” but it’s okay, because that will be the day your husband and your kids see you and tell you how beautiful you are and you’ll hold that close to your heart on the “other” days.
Oh, and for the record? I think “kicking Lupus’s ass Erin” is the most beautiful I’ve ever seen you. Beauty is in the eye of the beholder. Trust me.
I think I know how you feel about, my autoimmune disease fighting friend (and fwiw, I think you still look good). I have Graves’ ophthalmopathy which makes my eyes bulge. I had to wait for almost 5 years to have surgery because I couldn’t have it while trying to conceive, being pregnant, or breast feeding, and as a 31 year old woman, I felt it was more important to have the kids. But God, I felt so ugly. Every day. Now my eyes still bulge but they look a lot better because of eyelid surgeries. They still hurt and tear up every day, which sucks, but that’s just the way it’s going to be, I guess. I’ll never look like “me” again (though as time passes, it’s harder to remember what that was), but I don’t get upset when I look in the mirror, which is really nice.
I wish you best and I hope you can get off the prednisone soon . My mother was on it (for the Graves’ eye disease as well–we are a genetically blessed family, I tell you) and had the same issues with the round face and body that you are having. It was very upsetting to her as well. Lupus is awful. Autoimmune diseases suck.
You are beautiful and your inner beauty, especially, is knitting your beautiful family even tighter.
I am so touched by your sweet son, liking you “better this way”. I am always amazed by my kids’ visions of me and those they love. They have a magical ability to see right into the soul of someone and choose to “see” them as beautiful as the love they receive.
Much love to you and yours
Just wanted to stop by and say hello. A mutual friend, Bethany (Raising A Wanderer), sent me your way. I am slowly catching up on your recent events and just want to say that you have one more person rooting for you.
Thinking of you,
Jen
You’re always gorgeous. Even the look on your face makes me smile, because I can almost hear the wise crack that comes right after it! (And that’s a kick ass bracelet you’re wearing, by the way.)
Even if your additional roundness were “poor willpower” or “not trying” (think before you comment, people), you would still be beautiful. Beauty, real beauty, comes from within. But I know that you know that. And even knowing all of that, it’s still not shallow to want to look and feel like *you!*
OK..
Look away from the mirror and smile. Think of your family and friends and smile.
Then look back at the mirror.
You’ll look beautiful
You are beyond beautiful Erin… inside and out… and my admiration and love for you has only grown stronger throughout the years… never waned… and you WILL win and kick ass and feel your kind pretty again… because our kind of pretty is already being fulfilled by the you of the now…
HUGE HUG for you. Hang in there.
What your son said to you made me tear up a little with its sweetness.
Erin,
Tonight my daughter went to visit a very ill friend who is also on steroids as well as chemo right now. We told her, to prepare her, that he would look different, that she might feel a little scared or uncertain, but that inside he was still the same person.
After their visit, I asked her how she thought her friend looked. I wondered if she had to struggle to “see” him; if she had to battle back some uncomfortable feelings.
My 11yo gave me one of those exasperated eyerolls that 11yo girls do so well and said, “MOM. We just hung out and played games. It wasn’t like we were LOOKING at each other and taking notes! Jeesh! He just looked like whatever he looks like!”
So, you know…I know it’s different for us Women Of A Certain Age to be so blase about these things, but really…I know you don’t think you look like “you” anymore, but you don’t *not* look like Erin anymore, either. And inner beauty, yeah, you got it. But hell…I mean…I know that can sometimes be a line people feed people, but inner beauty…whatever. You look great. I know you don’t believe it yet, but I’m telling you…I grew up around hundreds of naturally moony-faced Eastern European women who were nothing but exotically sexy. And in my advanced years, my moony-face Lithuanian genes are catching up with me and it’s not all that bad. Some Eastern European boobs would be good, too, but the middle-age genetics fairies haven’t blessed me.
I know you feel ill on top of it all. That sucks. But don’t worry so much about the moony. Concealer and a deeper shade of lipstick work wonders (I’m not so feminist that I don’t use make-up. Sue me.) Plus moony face hides wrinkles.
There. Now keep writing. We adore you. Buy some dark lipstick. Maybe a mink hat, too. xxxxoooo
Vanity is a killer — I don’t know any woman who doesn’t have at least a modicum of it when it comes to herself and when it comes to her friends she sees only the beautiful person she loves and not the “flaws.”
I look at your picture and I still think you’re beautiful. For whatever that’s worth.
Kotecki-Vest,
Chin up, cheer up. You’ve got a great support system in your Tweeps and an even more amazing one in your family. Hold on to that and hope and they will see you through the darkest of nights.
Namaste,
zach
Your son is amazing. When you get sad about how you look, look at him. Look at your daughter. Look at the love in their eyes and in our husbands eyes when they look at you.
It’s temporary Erin. It is. And you are still beautiful. You’ll feel it again soon hopefully.
You are all kinds of gorgeous. Okay…maybe your liver isn’t pretty, but the rest of you? Just perfect.
As someone who struggles with their own beauty (& I am not on meds) I understand the battle with the mirror.
I feel stupid saying this because I often forget myself – but we are our own worst enemy.
Btw- I see no moon face, just apretty face. 🙂
Don’t beat yourself up for wanting to look like your old self. You will, again. Until then, focus on the parts of you that make yoy feel normal.
Isn’t it the wanting to have the you that you know back that will help pull you through? I mean after the amazingly tender and wondrous things your husband and son say to you and the light that your daughter shines at you?
Your beautiful life will get better. Your beauty is still there, robust and irresistible as ever. Trust those around you.
Count down the days to the steroid wean. You will recognize your face soon enough. I can empathize so much. I was on them a lot during high school because of my knees. The round face & weight gain is so awful. Even if you don’t eat you gain weight. Hang tough!
You are neither fat nor ugly.
Just know that.
You are beautiful and you are loved.
this part DOES matter! it’s you in so many ways you want “back”. when my partner became a paraplegic…i found the meaning of beauty. beauty in the imperfect human body. she is so very very beautiful to me. her beauty is so pronounced to me b:c i’ve seen the fragility, the fight, the strength that body has endured. you ARE a beautiful woman. i pray that you feel your beauty soon…b:c i know all of us here see it.
I love your candor here and I can absolutely understand it. Having said that, thank goodness those drugs are keeping your liver in check and you’re here! I agee with your son. There is something very very cute about those lovely round cheeks.