Confessions of an Unapologetic High-Maintenance “Spoonie”


pedicureI am unapologetically, standing proudly on my perfectly pedicured toes proclaiming that I am high maintenance. Where exactly is it written that just because I have Lupus, I have to accept the life of a bag lady? Over and over I hear the same thing from doctors, friends, strangers, facebook friends, and people who friend request me just because they think a higher friend count looks cool…. “you must not be sick if you can get your hair done, sit long enough to get a manicure, make it through an aerobics class, have a glass of wine, dance naked with a lampshade on your head” Ok, that last part may have been too much information, but the ridiculousness of some people’s reactions to my life warrant such over exaggeration. I am a girlie girl….I like pretty things, I like feeling pretty and I like pampering myself. If anyone deserves to feel pretty on the outside, it’s those of us who feel like our insides are anything BUT pretty. I like looking put together and normal to the outside eye, because anyone who is chronically sick, knows on the inside you are more of an out of control mess than the public relations department of BP.

Sure, there are the days that I drag myself out of bed, look into the mirror and realize I could frighten small children enough to go running home to their mother’s arms, crying about the scary ghost lady down the street. I could care less if my entire head looks like the “hair gel” moment of Something About Mary, or I look pale enough to play a very convincing lead in “Powder…The Sequel.” I shrug my shoulders at the fact that my body hurts so bad the only thing I can stand on my skin is an XXL t-shirt that announces to everyone proudly that I “drank the Rooster shot and lived to tell about it”. I hold back the tears when my 3 year old sees me dressed and out of bed and says “Mommy, you pretty, you not sick no more?” I hate looking at that woman in the mirror. She’s not me. She’s not the woman I have known all my life….the one that never needed sleep…never stopped….and had more energy than a room full of preschoolers with an endless supply of Fun-Dip. That woman was invincible. But she is gone…she’s been gone for some time now. Instead, I find myself stuck with a new version of me….the one whose body shuts down well before 9pm….who pays for days for a simple outing to the mall…..and whose energy level is more on par with a senior citizen with a bad attitude. My “me” days are few and far between, so when the autoimmune gods bless me with one of those coveted days where I look in the mirror and see “Steph” instead of “What Steph used to be”, you bet your last spoon that I’m making the most of it.

Yes, my hair IS highlighted four different colors….it takes a good 3 hours of sitting in the salon chair, my knees screaming and my fingers so stiff I resemble a zombie from the Thriller video. But guess what? My hair falls out. I have patches on my head that have hair and patches that don’t. Some days I am a 36 year old woman with a comb-over that could put Donald Trump to shame. After I take a shower on any day of the week, it quite possibly could look like I murdered Chewbacca in my bathtub… forgive me if I feel the urge to bleach the gray out of the hair I have left and feel pretty for half an hour.

spray tan boothYes, I regularly get spray tanned. If I could lie outside in the sun or fry my internal organs in a tanning bed like a normal high maintenance girl, I would…trust me…there’s nothing better than tan lines. However, both ways of sun-kissing my pale, Casper white skin send me into a flare tailspin before you could say the word “crispy”. Forgive me if I prefer to look in the mirror and see the bronze glow of “tan in a can” rather than the transparent, dark circle eyed, butterfly rashed, bruised up skin that normally looks back at me. White is not a color…..white is a bread and what I wore on my wedding day.

Yes, I work out. I even *gasp* teach aerobics classes. If I have to hear ONE more time “well if you can exercise like that, you must not feel too bad”. To this….I only have two heart-felt words. BITE ME. If your muscles have never ached so bad that you cry hysterically as you sit in a scalding hot bath at 3am, then you have no right to judge what I do to prevent it. I work out to live. I exercise to function. I sweat to be able to walk as you run. Working out is not a chore I do to wear a size 4 or to have six pack abs. I work out so I can drive to work….stand for longer than 10 minutes and pick up my son with arms that don’t collapse from muscle failure. If all my hard work gives me the illusion of a strong, fit and normal woman, then I’ll take it….and if that illusion makes me less sick in your eyes, well, then I’ve done what I set out to do. I have some women who have taken my class for ten years who just recently have found out that I am sick. I worked so hard for so long to not seem weak….to wear that bedazzled superwoman cape that makes me invincible. You don’t see the days it takes me to recover from one hour of exercise, or the tears I cry alone at night because I can’t tell you how much each bead of sweat costs me in time with my family. Ironically, I have so many more of them tell me that now that they know what I overcome on a daily basis….it gives them MORE motivation to push themselves to their own fitness goals. I remember one participant’s words well…. “If you can get up here and push yourself with all you go through, then there is no excuse for anyone, no matter their size, shape or condition, to not do the same.” She made me cry. She “got” it. Very few people “get it”. I was so overwhelmed with emotion I made the entire class do 100 lunges. I should probably apologize to her for causing her to be chased to the parking lot by a mob of angry spandex-clad class members in muscle failure.

manicure Yes, I get my nails done on a regular basis. Continually looking at blue nail beds because of a never ending battle with Raynaud’s Syndrome became more than I could stand. Slapping on a layer of acrylic with some hooker red nail polish makes me happy. If I have to look at swollen knuckles and numb fingers, at least at the end of those distorted hands, I have something pretty to look at. They really look nice when I have my head shoved in the toilet, throwing up every internal organ I have for a full 24 hours after my weekly methotrexate injection. They are also a nice visual contrast when having to tick off on each finger the number of pills I have already taken, or the hours it has been since I have been able to stomach plain water, or the number of days it has been since I have been able to sit at my daughter’s softball game for longer than 10 minutes without having to leave in pain.

The phrase I hear most from well meaning family and friends is…. “But you USED to (socialize party, stay up late, go to the pool, go on day trips, clean the house, etc). This statement is true. I most definitely did USED to do all that stuff and more. I used to be unstoppable. I simply am not that woman anymore. I can’t be. Nothing is the same. If I’m able to get ready and go to dinner with my family, I am proud of myself because I have once again….gotten the best of my disease……that day. The next day, it may come back with a vengeance and remind me that some days…I am at the mercy of Lupus’s will. I never know from one day to the next, or for that matter, one hour to the next, how I will feel. Just because I felt fine enough this morning to type this on the computer, doesn’t mean that in two hours, I won’t have to take a nap…..simply because my body completely shut down on me. Every day is a gamble and some days I feel like I am playing blackjack with my spoons. I see the cards that I’m dealt, and know how desperately I want to get to 21…I mean let’s face it…it’s not often that we win and the Vegas odds most definitely aren’t in our favor. So, some days I will tell the dealer to “hit me” and I get a queen and an ace and bask in knowing I beat the “house” for the day. Then there are other days that I have 18 showing and gamble on one more card…only to have that 6 of clubs show up and lose all my chips and spoons for the entire week.

I don’t look sick. I know it….I hear it constantly. If I stopped doing all the things that I have just talked about…would I look more deserving of your sympathy? I am assuming if I could see all of your faces, they would all be nodding in agreement. Good. That’s exactly my point. I don’t want your sympathy. I want your friendship…and I want you to realize that the small things that I do to make myself feel and look better are not done out of vanity….they are done out of an intense need to feel normal….to feel like you do every day of your life. I value the days I can look in the mirror and smile back at the reflection. Those days are few and far between for me. If there is one thing that living with Lupus has done for me, it’s made me appreciate the days I can wear heels, the days I have the strength to fix my freshly highlighted hair for a night out with a husband who has watched me cry myself to sleep for a week straight because I couldn’t tell him what hurt……because everything hurt… has made me live for those infrequent moments where I can show my daughter how to flat iron her hair and how to correctly apply lip liner.

So the next time that you complain because you’re having a bad hair day…..remember to be happy that it’s not falling out because of the chemo injection you took last week. The next time you complain about it being too hot outside to play with your kids….remember to be happy that an hour in the sun doesn’t send you into a flare that has you bedridden for days. The next time you say you are just too tired to go to the gym…..remember that there are those of us that would kill to make it through an hour on the Stairmaster without having knees the size of cantaloupes and three days worth of anti-inflammatory injections. The next time you complain about your nail polish not matching your outfit….remember that you have the ability to paint your own nails without your hands shaking so bad, your fingers end up looking like a CSI crime scene.
Yes, I’m high maintenance…and I make no apologies for it. I make the most of everything I do because it makes me happy. I would love to have time on my side….to not have to break plans with friends because I just can’t seem to wake up enough to shower…..and I would love for ONE day for you to walk a mile in my heels. Cause then maybe, just maybe, you would understand why the days that I can successfully put them on, I walk taller….I stand prouder….and I strut as much as anyone could possibly strut. I walk in those heels with pride beside my friends and family, because they know that tomorrow, those heels may sit alone in the corner of my room because I lost the battle that day.

Article written by guest writer Stephanie Kennedy

About Stephanie:
I live in Fayetteville, NC with my husband and 3 always hyperactive and occassionally adorable children. I was diagnosed with SLE in 2001 at the age of 27 and in the time since, have added Scleroderma, Hashimoto’s and Celiac’s disease to the original Lupus discovery. In my day-to-day life I am a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) with a local electric cooperative and part-time fitness instructor. For the past two years I have served on the Executive Steering Committee for the LFA’s Fayetteville Walk For Lupus Now event.
  • How I wish I had this article to share with my douchebag of a biological father when he claimed if I could write paper online to a lupus magazine then why couldn’t I write his business proposals, etc etc etc.

    We make so many sacrifices in thee attempt to seem normal again! The nerve of anyone who wishes us to suffer for THEIR benefit!

    I love you steph! You inspire me always! <3

  • Liz

    This post has me in tears! I sit through the highlights too, because if I have to take a three hour after walking fifteen minutes, then my hair will look damn fantastic laid out on my pillow! I do so often feel guilty about it, though…

  • Uppity Stephs Unite!

  • I had an insurance company question why, if I had fibromyalgia, was I able to make a trip to the east coast and get married? How I was able to chase my 18 month old who was running out onto the street? Some people just don’t get it.

  • Sherrill

    You give me hope that soon I will be able to make it through my daily exercise and lose the 40 pounds that the prednisone left behind. Thanks for the reminder that we deserve the same as everyone else.

  • Kara

    What an excellent article!

  • Vickie Foster

    Stephanie, I know how you feel, it does make us feel better to have our hair, toes, and nails done. I have Lupus and I am a Nail Tech. I have alot of clients with “BUT YOU DON’T LOOK SICK” diseases, and some that you can tell something is wrong. It makes me feel good to see my clients happy and feel pretty, maybe it eases their pain for a moment or two. I know it eases mine to see them with a smile on their face, and maybe for just a moment they forget their pain…God bless and thank you for such a beautiful story.

  • Maureen

    I LOVE YOU!!!!!!!!!!!!!!!

  • Reta

    Where does it say you have to look like a disaster to be sick. Maybe it’s stamped on my butt, I can’t read.

    Coloring my hair is something I do for ME, and having my nails done are things I do for ME, to make ME feel better.

    I have plenty of days when I look like crap but I stay home those days because I feel really crappy.

    I have friends that understand and never make stupid statements. They do express concern when they think I look tired and will take over my activities for me. It is a great support network. I am so blessed.

  • ami9342

    I cried reading this because it could so be me you are writting this about. I’m still in the process of getting a diagnosis, it’s been a long drawn out battle. I’ve given up all my extra curicular activites (except being with friends and family) and I’m a used to be superwoman too. Thank you for this article

  • On a regular basis, I remind myself that the silver lining in this cloud is that I no longer have to adhere to a conservative office dress code. Nail polish is no longer limited to clear and natural — last week it was teal with turquoise glitter on top. When I was at the drug store yesterday, I found Christmas green and screaming orange on clearance, so I’m deciding between those. Saw some glow-in-the-dark glitter, but didn’t have enough cash with me for that much of a splurge, and am wondering if there will be any left, half-price, the day after Halloween.

  • RedCurlyHead


    Thank you for putting this out there. I am struggling with an as-yet-undiagnosed disease. I, too, am high maintenance. It was necessary when I worked full time doing marketing for a wealth management company. I had an image to maintain. Shoes, clothes, hair, makeup, nails had to be perfect. It was required. When I bought new boots last week I was thankful the equestrian look is in. Made it easier to trade in my sky-high heels for flat, comfortable boots that wont cause me to lose my balance. I used to love dressing up every day. Now I’m happy to just manage a shower every day. So color your hair and get you nails done. You are worth it. We all are!

  • melissa

    since being diagnosed with the Lupus a year ago i have become more girly girl i want to look good on the outside because i feel ugly on the inside. and i hate to hear but you don’t look sick too. it makes me angry sometimes at work ( i work in the medical field) to hear some of the excuses people use to get narcotics. when you know they are just wanting a high. i do with out the pain pills because i see so many who are addicted to them and i guess (lol) i am hard headed and not ready to go there yet.
    your writing makes me think about all the things i feel everyday on the inside and i will not feel guilty anymore because i bought that pair of pants that make me feel like a million bucks.

  • April

    I too am a high maintenence spoonie. I have some control of my outward appearance. Being sick is such a toll on a persons self confidence and looking outwardly pretty does ease some of the shame.

  • Absolutely brillant! You’ve said it all with grace, honesty and as much heart as I’ve ever read before.

    Thank you, thank you , thank you.


  • Nix

    wow… you rock. i have the same attitude you do, and i didnt think there was anyone else who did!
    got to love those moments when you walk into a room and heads turn.. because you’re walking like you’re 10 feet tall through the sheer joy of being able to

    cant do my nails yet, i have a tendancy to cut myself, but i’m getting less bag lady ish the further i get up the upswing. heres to lipgloss & getting your hair done!

    this part:
    “If I have to hear ONE more time “well if you can exercise like that, you must not feel too bad”. To this….I only have two heart-felt words. BITE ME. If your muscles have never ached so bad that you cry hysterically as you sit in a scalding hot bath at 3am, then you have no right to judge what I do to prevent it. I work out to live. I exercise to function. I sweat to be able to walk as you run. Working out is not a chore I do to wear a size 4 or to have six pack abs. I work out so I can drive to work….stand for longer than 10 minutes and pick up my son with arms that don’t collapse from muscle failure. If all my hard work gives me the illusion of a strong, fit and normal woman, then I’ll take it….and if that illusion makes me less sick in your eyes, well, then I’ve done what I set out to do. ”
    really resonated with me. im more flexible than almost anyone i know (except the circus performers) & i constantly get the dubious or suprised & skeptical looks from people who’ve seen me walk with a cane when i’m stretching. but i figure – if i can almost touch my toes with my elbows on my best days, i’ve got a good shot at being able to reach my feet to put shoes on on the bad ones

    power to you love! its nice to read something so blatantly unapologetic – why should we have to justify how we chose to live our lives anyway?

  • AKAseemedfine

    “AMEN” is Right ON Carol, and oh Steph, I wish I had a “Bite Me” T-shirt; size XXX of course, tho this new RX has got me down to 98..after the steroids once had me up to 248! crazy, eh? 🙂 Bless you Thomas; blessings to all of you who truly try to understand and support your g/friends, spouses and loved ones who are ill.
    I unfortunately look like the Bag Lady mentioned here- & I can’t do my own nails, either. It seeems a small thing-Oh, But it’s not! I see now that I’ve given up these last couple years (RA, Chrohns,Raynauds’,& lots more)
    But..You have given me a bit of inspiration to try just a little harder! You know that old saying? “It takes Work to Look This Good”? People may never really know the whole truth, but that’s okay. I want to be a ‘girl’ again 🙂 At least once in a while. Thanks So much, and gentle hugs to all.

  • Thomas Klem

    My dear girlfriend has Lupus, and numerous related and unrelated health issues. She, too, is very high maintainance. Prior to my discovery of the spoon theory, her explanations of the disease’s effects on her body only left more questions from me on occasion. The spoon theory put it all in a perspective I can better understand. After her difficult reading (she also has Cataracts), she wanted more copies for her friends. I’m gonna share it, too.

    As to the blog above and the spoon video, if the caretakers of this site would consider alternate versions of same, for those like myself, with poor vision, that would be much appreciated.

  • I’ve been feeling guilty and selfish lately for using some of my energy to pamper myself with little things. This article was just what I needed to know that it’s ok to do those things. Thank you very much for writing it.

  • Cindy

    Thank you for sharing the thoughts so many of us feel but can’t express to friends/family/coworkers etc. Sharing this helps others know they are not the only ones feeling like this. My daughter, 11 now, was diagnosed last fall with Syringomyelia which has changed every minute of the day for her and my husband and I. She’s going through painful flare-ups right now and if I hear one more well meaning person say “Well, she seems/looks okay…..” I will scream……..That’s right, my girl is one tough cookie, they believe her smile through the pain.

  • Julie

    Amazing. I’m in tears. I have autoimmune hepatitis, primary billiary cirrhosis, and now, probably, lupus. After my consultation with the rheumatologist, where he said the dreaded “L” word, I went straight to Sephora and spent an ungodly amount of cash on eyeshadow and some fabulous Dior mascara. I seriously wondered if dropping a good chunk of change on makeup was a healthy response, but your article summed it all up so wonderfully for me. It’s control for me, and a bit of a victory if I can look like I like to look every day. Or almost every day. Thank you so much for writing this article.

  • Annette

    I am newly diagnosed, but a long time sufferer and can relate to much of what you write. I think having my husband read this will help him to understand. I just learned last weekend how debilitating the sun can be to me. My family just doesn’t understand how much effort it takes to get up and go with them and how much pain I’m in throughout the day. Thank you for putting how it feels into eloquent words…and I too am jealous you can wear heels. :p

  • Janilee


    OMG! This story must be read by all my friends and family! I have a lot of the same needs. I am high maintience. I know I am, and I love it, because it makes me feel good to look good. Knowing that just for a while I am me, not my Fibromyalgia, like everyone wants me to be.

    Thank you,

  • Mary Ellen

    Damn woman, you can wear heels? I’m so jealous.

  • Gail

    Thanks for sharing…
    You write very well and I can only try to feel what you have gone and go thru.
    I have MS and it does it’s own thing too… you just never know.
    I try to stay out of the Heat, it does not like me.
    Being of High Maitenance… You should be like this… I think it’s Great!!! You have inspired me to try to be this way, we have so many not so good days/mins/moments, etc… we need
    to take care to be happy and to help others.
    Thanks again for sharing – God Bless, Gail (State of Maryland).

  • Dottie Balin


    Thank you so much for your very real words. I can relate to your thoughts and feelings with tears in my eyes as I read your story. I too was diagnosed with Lupus in 1999 and also have overlapping diseases; MS, Raynaud’s, Fibro, Diabetes and Thyroid.
    You are truly an inspiration to all of us and may God Bless you as you continue to battle day by day.

    Thank you Christine for sharing Stephanie’s story with us. You are also an inspiration too.

    Spoons Forever Dottie 🙂

  • Deb


    May God bless you and your family and I hope your faith helps you through all you go through.

  • Stephanie – You continue to inspire & amaze us here at the Lupus Foundation of America, Piedmont Chapter. We are so very lucky to have you as one of our Everyday Heroes. Christine – Thank you so much for giving our girl this amazing opportunity to tell her story.

  • I thank you for writing this – it applies to all invisible diseases that many of us live with. Everything about it rocked. I hope you dont mind but i posted it on my blog and of course cited you as the fantasical writer behind these amazing words <3 thanks you isnt enough oxo

  • I have read this twice now. I love it more each time I read it. I do those things for myself as well, only I always feel guilty about it.
    Anyway… great article… and good luck on your battle with LUPUS.

  • Darlene

    I read some of the comments to my husband. You see, even though we’ve been “living” with fibro since January 2008, he still has absolutely NO CLUE that coupling fibro with sleep apnea, CFS/ME and a few other letters of the alphabet means I am tired. All the time. I have breakthrough days where I can go, be, do again but for the most part, there is before and now. Now consists of a boatload of meds. Lots of doctors. And appointments. And regular visits to my friendly chiro, massage therapist and reflexologist, as well as to the local ladies gym. Why? Because they all help keep the flares at bay for the most part. Hearing people at the local department store gripe because I don’t look sick but am in a scooter because walking too far throws me into an asthma attack makes me angry. What defines “looking sick”? Should I instead wear my mask inside (which I do during cold and flu season when I absolutely have to go out)? Carry my cane inside? No. What all of these diagnoses have done for me is increase my compassion toward others. Steph, you said it when you said walk a mile in my heels (or in my case, my pretty diabetic pink and white sneakers)! Then judge how I feel. How, even sleeping on a good bed that cost an absurd amount of money, there are days when it still takes too long to get out of bed. When a shower seems like it is as big of a challenge as climbing Mount Everest. So thank you for a timely article. I really wish the nay-sayers and folks who don’t get it could understand.

  • Phil

    Thank you for pointing out that looks do not equal a wonderful life! I am going to use your “two heart-felt words” of BITE ME!!! the next time I hear that old refrain. . . “But you look so GOOD!!!!!” Yeah. . . and would you like to know how many hours it too me to get that way? Thanks for saying what needs to be said, Stephanie. And, yes, you do deserve those gorgeous painted toes!!!

  • Samantha Howard

    This was the most wonderful thing I have read in a long time. I appreciate you going through the battle to type it up for everyone to read. I have Chiari Malformation, Seizures, and a number of other problems, and I am 28. I have so many ppl say all the time, that I’m too young to feel this bad, or that they just can’t tell that I am sick…..Its the most annoying thing even on top of the pain and troubles we carry, its still the most annoying thing, to feel like u have to explain, why you really are sick even if you don’t look it. So I agree with you 100%
    Thank you so much for sharing this 🙂 God Bless you Girl 🙂
    I wish you more painfree days

  • Grandmere

    Not enough words to tell you how great this article is, Steph!! Having had to watch my 2 daughters go through this really crappy disease–it makes me proud that one of their best friends has the talent and clarity to put into words all of the insanity(not personal, Babe!), the pain and the stress that so many people have no clue that is inflicted in those that have this disease and to the people that love them so dearly. KUDOS to you Steph!!

  • Jen

    Thank you! Thank you! I have been working out my whole life and and was diagnosed with Lupus, SLE about 5 years ago and along came the overlapping diseases; RA, Raynauds, Fibro.

    Well, I didn’t want to stop working out but like you I worked through the pain and ooohhh soo many tears! I knew what I was doing and I paid for it. But my passion was the gym. And like you I wanted to feel like “the living”. Well I found that when I started spinning class! Oh my gosh it opened up so many new doors and friendships for me!

    I felt alive again and NORMAL! Plus it helped keep me in a size 2! Bonus!! 🙂

    Like you I am also on the board for the Walk for Lupus in Fl! Cool!!

  • T hanson

    I am sorry that you have been suffering in this way. It must really suck. It is a sad thing that your life has to be a reality check for those who whine over having to “deal” with such things like standing in line at the grocery store, someone lied about me, we can’t go on a vacation again this year…
    The stuff people say to you must at times be as difficult to deal with as sickness. Anyway, I am sorry for your hardship.

  • Renee Culverhouse

    Great article! I cannot count the numbers of times people have looked at me curiously for working out. I know they were thinking, “If you are sick, how can you do that?” I also know they wonder why I don’t look worse. We know it is because they don’t see me on those bad days. It takes hours to get ready and days to pay for it. We owe it to ourselves to claim whatever parts of our lives we can whenever we can. Thank you for sharing your struggles and your triumphs.

  • Kathy Auen

    One of the best articles I’ve read. Could relate to your feelings so much. Be grateful you have a husband who lets you cry; mine is frightened of my tears.

    I, too, am high maintenance. For years when close friends have inquired about my health, I’ve answered “I feel like sh#t but my nails look terrific!”

  • Jeanine cox

    Wow! What a great article! I want to send this to all my friends and family that think I’m doing great because I can sit for 4 hours to get my hair weaved. I do it to hide the huge bald spot in the back of my head. Yeah , I’ll be sore and in pain for 2-3 days later but it worth it to know that at least I look good on the outside.
    I too, exercise to feel better, not to lose the fifty pounds of prednisone weight I put on. Congrats on a job well done. I hope to read more from you soon. Now, I’m off to get my nails done!

  • Tina Fox

    Thank you for writing such a heartfelt and funny article.
    I feel like a bit of an interloper because I don’t have Lupus, I have Syringomyelia. I do however agree that people expect us to look scruffy, make-up free and with greasy hair just because we feel awful. And as you so brilliantly pointed out that’s exactly why we need to do it.
    You are an inspiration to us all and I think I got an extra couple of spoons out of reading this!
    We are all so grateful for this.

  • Awesome article Stephanie! You bring clarity to those who don’t ‘get it’ … you are truly an inspiration and your stength is amazing … you are an amazing woman.

  • Nancy

    You really speak for all of us! Thanks so much for a wonderful piece of writing. I sit here looking at my swollen hands-which no one ever notices except when they are badly bruised from the steroids-knowing I am blessed with a “moderate” case of lupus. Since I’ve never been able to achieve remission I’m just grateful it isn’t worse. Like you, I push forward and try not to let it take over my life.
    Thanks again for all of us!

  • Jen Martin

    Hell YES!!! I so needed this today. I totally agree with you!! OMG I giggled all the way through this, because I can totally associate with this. You totally rock! Thank you for being an inspiration, and I love to know that we ARE NOT alone!! xoxo

  • Carol

    Can I hear an “AMEN!!!!!???!!!!!

  • Meredith

    Holy Cow….you took the words right out of my mouth! Well written! Kudos to you and take good care!

  • BrevityDC

    You are so completely awesome there are no WORDS to describe how AWESOME you are! I can’t even imagine what you suffer through each day, but I sure as hell admire and respect your determination and wish I had half your strength. ::hugs::

  • Kim Lee

    What a wonderful post Stephanie! I remember you from CC2, remember when you were diagnosed. This article made me laugh and cry all at the same time. I can absolutely relate to this one hundred percent. Struggling now to get my fibromyalgia under control I hear the same things all the time. I feel the way you, do what you can to make yourself feel good. You are an amazing woman!

  • Diane


    Thank you so much for putting into words what so many of us feel. I’m currently 48 and feel 84. I’ve had FM since I was 13, though it was diagnosed as RA until I was 30 when I finally got an accurate diagnosis. I’ve also had chronic migraines since I was 15, and by the time I was 32 they had become a daily curse. I moved to AZ 9 years ago from CA because the heat makes me feel better and the weather is more stable a longer portion of the year than it is near the coast. Since the move I’ve been able to work for the past 9 years, after 13 years of raising 3 boys while barely being able to get out of bed most days. The past year I’ve developed very painful arthritis in both my thumb joints, making it hard to do everything from opening pill bottles to crocheting. I’ve been unemployed since mid-February, and trying to keep my hair colored to cover the grays and using little makeup tricks to cover the dark circles under my eyes has become my new career. I’m trying to hard to look ‘normal’ as I go to job interviews, not to wince when I shake hands with someone because my hands hurt so much, trying so hard to work as many years as I can so that when the day comes that I have to apply for disability there will be enough money in my account to live on. I have good days and bad, and take the handfuls of drugs that make it possible for me to get out of bed each day. You inspire me, and I hope to read more of your posts in the future. Its good to know I’m not alone in trying to look well even when my body is screaming in pain.

  • Tina

    Hey Steph
    I feel like a bit of an interloper because I don’t have Lupus but I have Syringomyelia which gives me some very bad days – especially at the moment with the heat.
    You can make everyone totally identify with you and what you’re going through and at times it was like reading about myself.
    Keep it up because you are an inspiration to all who “don’t look sick”.

  • Carissa


    This “I hold back the tears when my 3 year old sees me dressed and out of bed and says ‘Mommy, you pretty, you not sick no more?'” hit me so, so, so hard. It must be so difficult to tell your baby that you’re still sick. I can’t even imagine.

    I had an idea of how life is for you everyday from just knowing you and listening to you. But hearing exactly how it is for you everday, is exactly why you are my inspiration for everything, everyday, all the time. Why I scold myself every time I don’t feel like getting on the treadmill, for feeling tired, for feeling lazy, because I know that I blessed with a healthy body and that I have no excuse. It amazes me when I read how you teach step and run as fast and as far as you do, I know I couldn’t do what you do. And that’s why I push myself to do more.

    I wish you didn’t have to do what you do, but thank you for helping me “get it”. YOU are incredible. Thank you for being an “unapologetic high-maintenance Spoonie”

    Love you, Steph, I am honored to know you. MWAH