The Story Behind The Smile, The Outlook Behind The Outfit *Update


140conference logoDo you dress to impress or do you dress how you really feel? That quickly became the big question for me yesterday on twitter. What started as a joke between some new friends I made, really had me thinking. I am cheduled to speak at the #140conference in NYC about Lupus, health related support and social media. I went back and forth with ideas of what to wear. I know this may seem like a trivial question. In fact most people decide what to wear the night before or the morning of an event, especially when you are a “#Spoonie” and are chronically ill like me. When you are chronically Ill you can feel fabulous the morning of an event or you can feel awful, you just can’t plan for what you can’t control. I have woken up before a speaking engagement and felt great, so it was heels and an outfit with buttons. When I am not feeling well and my bones ache I may need to wear flats and something comfortable and easy to put on. So you see for me and millions out there, fashion and health really do effect each other. In my mind and in my soul I am gorgeous and looking fabulous, but there are days when I don’t feel well and I feel tired, ugly and certainly less than fabulous.

I feel like if I really want to represent who I am most of the time, heck I should speak at the conference in pajamas! In fact I think that is what I must have tweeted to start this whole conversation. After all, I always say that one person can make a difference… even a regular girl like me in pajamas with an iPad. I really do believe that we all can do one thing to help someone else have a better day. It doesn’t have to be much, in fact through social media like twitter, facebook etc we can reach out to people who are having a bad day and help turn it around with a favor, advice, tips, or just a simple “hello” or “thinking of you”. Trust me, when you are wide awake from insomnia or pain, getting a simple tweet from someone over in the UK saying “Hi! I am here and I care” can make the world of a difference. No one should feel alone. So yes, although when I am out and about I do not normally roam the town in pajamas…the thought did cross my mind. I blog, write, reach out and hope to make a difference every day in my pajamas; why should this day be any different?

Reality check, this is NYC and the #140conference will be viewed all over the world. Do I really want to be the crazy chick who dared to wear pajamas? Will people take me seriously in bunny slippers? Let’s remember who I am.

I was the teenager who asked for a pink cast for her hand braces when the arthritis started to kick in at 16.

When I needed to walk with a cane, I got my dad’s spray paint and painted it to match my outfits.

I am the girl who put on mascara an hour or two before she gave birth to her daughter.

When  I lost my hair to chemotherapy, I am also the girl who found wigs that made me look hot, as opposed to an old lady.

I am the girl who started the website after hearing that expression for over half my life.

I believe that looking good makes you feel better. I believe that if you are stuck in pajamas make them cute. If you are very sick and in a hospital gown then you should totally rock cute socks!

A little lipgloss goes a long way, even if it is the only thing you have energy to do that day for yourself

So if this is how I live my life on the bad days, imagine what I do on the good days? I like to have my hair and nails done. I think heaven has a stylist and a make up artist who will cover up black and blues and dark circles from not sleeping. When I slip on a suit I feel more powerful, in a dress I feel more feminine, and watch out world if I have on a kick ass pair of shoes. I actually like when I go to a speaking engagement where no one can pick out “the sick girl” in the crowd. I like when I say I couldn’t walk 2 years ago, the crowd gasps because they couldn’t tell by looking at me. I want to stand out and I want to look my best. My disease may be invisable, but I don’t have to be.

What will I wear to #140conference this year? You will just have to come to the conference or tune in to find out!

*As for the joke between twitter pals, we have now set up a poll where you can vote, or comment on what I should wear. I thought no one would respond or care, but so far we have close to 100 people who voted!! I guess people are as passionate about fashion and helping people as I am. Lupus is NOT contagious, but hopefully my passion for helping others is.

 Soooo the big question- what did I wear??   well, you will just have to watch the video and see!  click here to see the video!

Written by Christine Miserandino, @bydls on twitter

  • I simply don’t have the energy to dress up, fix my hair or wear makeup. I go for comfort. Since I moved to South Dakota, most of the year, comfort equals multiple layers of sweatshirts, fleece lined sweats, or heavy duty sweaters with jeans because nothing else will block the icy wind! If I do try to wear a skirt or dress, I usually have to put winter tights on to keep my legs warm. I am allergic to acrylic and wool, so that limits things a bit. I admit to missing cute shoes, but my feet are just in too much agony for anything except sneakers, fleece lined boots or boring flats. I cut off most of my hair so I no longer need conditioner or any sort of styling product. The only thing I consistently put on my face is lip balm.

    But my clothes still reflect a bit of my personality from time to time. My nightshirt has a print of white tigers on it, and with it I wear pajama bottoms in a black and grey leopard print. Most of my t-shirts are from rock concerts. I wear purple whenever I can find it (I only shop for clothes once day a year), and I am not opposed to wearing hot pink if it happens to be on something really comfy. Speaking of pink, I did put hot pink duct tape on the rims of my wheelchair, mainly because I didn’t want it to get lost while I traveled, but also because it’s a conversations starter.

    Whatever style works for you, go for it! So says the woman wearing a Def Leppard t-shirt, cotton shorts and terry cloth house shoes :0)

  • michelle

    I live in jeans and shirts…the shirts depend on how I’m feeling but almost everything I have can be dressed up or down depending on my mood. I love wearing nail polish usually in a low key pink or an outragious black cherry. I have rules…I must get dressed even if that is all I do all day…it helps me feel more human and less like the blob. I agree no bras but I do have this new comfy waterfall type cardi with faux fur collar and cuffs that makes me look and feel amazing even when I don’t feel it. I made ankle bracelets large enough to go around my elastic ankle support and hung things on it are meaningful like a cat, love, courage, believe etc….

  • Kim


    Thank you! We have all been there. Since I have been sick I have noticed that I have become more aware of fashion myself. I have become obsessed with nail polish and make-up trends like never before in my life!!! I now try to add a little sparkle or glitter to myself whenever possible. I have my hair cut in an easy style so that it even looks decent straight out of bed. And like so many of us spoonies there is a lot more elastic in my wardrobe now. I try to avoid wearing a bra whenever possible because it just hurts to much.

    So I say wear something super cute that makes you feel amazing, whatever “category” of style that fits into!

  • Bonniw

    You read my mind, you spoke words that I can not find. Wear your jammies for me! The lady who ‘looks great!’,.with the roses cane, the for-get-me-nots cane! I have MS, I HATE MY ROLLATER…BUT I USE IT WHEN I FEEL SEXY (twice a year!) So I can wear MY SHOES or my HOT BOOTS

  • wouldn’t it be great if we showed up on stage at the #140conf in Fuzzy Robes and then reveal our”fabulous”outfits… transforming or not– we only have 15 minutes – just a thought!

  • you guys are the best! The comments, responses and ideas are great. Who knows what I will do- as you all know- I could wake up that morning with big plans and be spoonless. we will see!

  • Charly Risenmay

    I loved this and the pics! I’m 45 and hanging out in bed a lot. Helped me to feel supported! I don’t wear pj’s. I wear athletic shorts and t-shirts. Maybe I ought to trade them in!

  • Thanks for letting me know I am not the only one who spends most days in her jammies. While 3 out of five days I attempt to put on actual clothes, my yoga pants & tees aren’t really that far from my p.j.’s so it isn’t a stretch. But I also try to “get cute just for me,” as well, meaning I put on makeup even if I am not leaving the house. The dog is always thrilled to see that I have on mascara just for our afternoon walk!

  • Rena C., Indiana

    Meeeee tooooo! I don’t like the “poor pitiful patty” routine either. I like to wear bright colors because they make me smile….which makes it easier for me to help OTHERS smile. Thanks for your blog. We appreciate it.

  • dora

    I hate it when I wear my pyjamas that people make comments. esp the docs. bottom line, my job is being me. I get to wear pyjamas. that is my job. when I am no longer in pain and sick I will consider wearing fancy clothes. right now I am okay with all of my clothes being very comfortable.
    love what you are doing for all of us.

  • Sherylee Harper

    I love this. Great article! I would put clothes out the night before and ended up changing things the next morning, except Fridays. Fridays are always ‘RED’, to support the troops no matter where they are. I gave up on the buttons many years ago because of the arthritis. No heels for years because of degenerative spinal issues. I have not been able to work since April 2008 so now I can wear pretty much anything I want! Fantastic! So well said.

  • Kittie

    Love your writing, and your attitude. Thanks for sharing yourself and spreading the sunshine!

  • lisa moretz

    too true. I used to say the better I look, the worse I actually feel. I try to find cute comfy shoes for the days when hands don’t work & it’s cold outside. dresses that look like they have buttons are a favorite trick. fun sandals are all the rage right now. and bless my hairstylist, who knows about lupus. he knows I want it ‘ short and messy’ so that no one can tell when I’m having a bad hand/hair day. go cute, keep shocking them. but if you go w/ the pj’s – I know it’ll be something cute & sassy. after all, if nothing else , we spoonies have a great sense of humor. thanks for what you do.

  • Natty

    Dear Christine.
    You are a true hero to everyone who uses this site.
    I think you should bite the bullet and go for it.
    You will be accurately representing how most of us spend our time, especially during a flare up.
    What we wear in no way affects who we are, or our ability to parent, surf the net, chat to friends etc.
    Can you get a pair of PJs with spoons on?!
    Conferences can be quite dull sometimes, but you and your message will definitely be remembered if you wear PJs!
    There is a hospice here that does sponsored walks at night and PJs are obligatory!
    Having read your article yesterday I actually went out in my PJs last night! I desperately needed a cup of tea but had no milk!! Had been in my PJs for hours so I just got in the car and went to the garage for milk! My PJs look a bit like a tracksuit. I was really nervous but no-one said anything.
    People don’t realise that we are often incapable of getting dressed. If it was accepted that sometimes we need to go out wearing PJs, we wouldn’t be confined to our homes so much! I am even embarrased to open the door to the postman in my PJs in case he judges me! How unfair is that?!
    You could change the world at this conference, and everyone here will be right behind you. Perhaps we could all post pictures of ourselves in PJs?!
    Be brave and go for it.
    If you can’t be famous, be infamous!!
    Good luck, let us know what you did!
    Huge spoonie hugs xx

  • Ann

    Great article! I was actually blogging about this (ok-more like a whine-fest turned positive)…and I really started laughing when you mentioned ‘rocking your socks’! Here at home, I get eye rolls for buying the most funkiest socks, or most colorful running shoes-even the lady who does pedicures shakes her head at my choice of color. I figure why not allow some fun? Let the ‘spunkier’ side show when your body is wonky:)
    Seriously though, I think that no matter what you wear, Christine, people will take you seriously-even with bunny feet-because it will be you that shines through; the woman who pours her soul into reaching out and educating others will always be seen. 🙂

  • Lynn Russell


    This article really hit home! I have just done a major revamp of my wardrobe because I have had to change the type of clothing I wear. Where I used to wear jeans, I now need to wear knits with an elastic waist. But, like you, I believe you have the right to look good no matter what you “have” to wear! So my knit slacks are in bright teal and purple and my lovely soft knit tops are the same.

    I personally think you’ll rock the conference no matter what you wear!! You are a powerful voice for those of us with chronic illness. Your blog was the first one I had ever read on this subject and I remember thinking, “Finally!! Someone who ‘gets it!!’ ”

    So you go, girl, in jammies and bunny slippers or a suit and heels!! 🙂

    Take care!

  • unicorn

    Hi Christine,

    Ooh, pj’s! Well there has been a trend for a while here in England whereby females are out and about in their pj’s. Very obvious pj’s, not just t-shirt and pants stylee ones.
    There is often derision, with the ‘chav’/charver’ (umm equivalent being trash?) label attached.

    Hmm I can’t decide, I suppose if an outfit provides cover for your cheeky bits it is ok… and pj’s are a lot more clothing than a lot of female ‘night out’ outfits, an aweful lot more : )

    On placement at a creche recently however, even I was suprised to see a mother walk her kids over to our building whilst wearing… a floor length white fluffy fleece robe! !

    Now I can’t wait to see what you end up wearing… ooh you could shimmy out of your pj’s on stage to reveal your cute glossy image undrneath… umm I meant outfit rather than your birthday suit : )

    Take care

  • Christine, it sounds like you dress to express more than to impress. You look good whether you’re all dressed up or in pajamas. You are definitely a hot lady.

    My idea of getting all dressed up is to put jeans on instead of my sweats and wear my good black engineer boots. I don’t even own pajamas, sleeping in t-shirt and sweat pants is just as comfortable and more convenient if I’m in and out of bed with naps.

  • I’ve actually started dressing up and making up MORE since I’ve been more sick. It fools me about as much as everyone else. It makes me feel more awake and ready to take on whatever challenges I face. Of course, when I’m home I am as comfortable as possible! If I didn’t show I took pride in the way I looked, I feel like it would almost be “giving in”, as much as I want to raise awareness about invisible illnesses.
    Actually, it probably affirms more that you don’t really know what’s going on in anybody’s lives, and most people are fighting a battle of some sort. It has given me a perspective that allows me to treat everyone with respect and do something small to make their day better, just as I would want.
    Great article-so glad I subscribed to the newsletter. Good luck with everything!

  • Christine, what a wonderful article ! You are truly an inspiration to all of us “spoonies.” No matter what you wear, you will be our hero to all of us who have invisible illnesses. I can relate to your post, which is so very true. I personally do not dress to impress, I dress to impress myself and be comfortable. I wish you good luck at the conference. May you have many “spoons” on that day. Thanks for sharing your thoughts. <3 🙂

  • JUDY

    many thanx for helping all of us ‘spoonies’!you are truly an inspiration to the rest of us ‘spoonies’! good luck at the conference! i wish i could meet you, but i live in se ga, so it’s only this way we can ‘meet’! multiple spoons to you! GOD bless! judy

  • Cindi

    You Are Sooo Brave and so Caring and Supportive to Everyone You Meet& Everyone Here! I Really Wish I could meet you in Person that would be Fantastic! But I Live in Largo Florida and I don`t Think you`ll ever come this Way.Please Let me know Because to meet you would be a Dream Come True. If Everyone in the World cared half as Much as You Do The World would be a Much Happier and Better Place.Thank YOU so Very Much for Improving All our Worlds!!! You`ve made so Many Peoples lives Easier With Your Wonderful,Factual and Touching Stories and By starting this Site. If you Ever need a Friend to Talk,Listen or whatever you can contact me at (727) 953 ~ 8456,Reverse the charges. I truly Hate to bother you with this but could you please have 1 of the online administaters call me or Email me at [email protected],I Have`nt been able to Log in or reach anyone to Tell them of my trouble getting on this Site.There are so Many people I want to Talk with an Offer my Support,addvice or Whatever they Need.I Love Helping People. Take Care,Be Safe. My Friendship,Peace,(“Spoons”),Care,Support,Gentle Hugs,My Very Best Wishes & PRAYERS Always to You & Yours & Everyone Here on This Site and their Family/Friends & Everones Pets,With out my Cats,KoKo & Vannah I Could Never have Lasted this Long… Your Amazing,THANK YOU for Everything you do for so many People. My Name on here is PositiveSpirit but it keeps coming up as the Wrong user name but it`s the Right one,My Pass Word is ~ Kittas2.