Wigs, Hats, and Make Up… Oh My! Trying to Look Better, When You Feel Bad.

 

We have all heard the dreaded saying “But you don’t look sick?” But the last thing we want to do is walk around looking like death 24/7. It is true that when you look better you feel better, but there is a fine balance between spending tons of hours putting on full face make up, hair done, and full wardrobe ready as if the paparazzi is coming. The thought alone is exhausting. But whether we choose to do 1 little thing to look better, a whole “make over” or nothing at all it is all about doing what is right for you!

yes, I am the crazy girl putting on mascara in the hospital! :)

yes, I am the crazy girl putting on mascara in the hospital! 🙂

 

We all want to look our best, even when we might not be feeling well. I think it’s a universal desire, not just for people who live with lupus. When you add lupus to the appearance mix, it gets harder to look your best. I have days when I look in the mirror and I can’t believe the girl looking back is me. I know that on the inside somewhere there is an awesome rock star just waiting to get out. lol I’m shocked by how my body feels that I do not see an eighty year old lady. My body, mind, and soul are definitely not in sync. People living with lupus and many other chronic illnesses have to deal with many things that affect our looks, including weight gain from steroids, or weight loss from other treatments. Hair loss or thinning, moon face, and sometimes a pale complexion from having to avoid the sun are some of the appearance issues for people with lupus. I bruise easily, and I always have dark circles under my eyes from not sleeping. Of course, I can’t forget the lupus butterfly rash than can appear across the face. These are just a few lupus symptoms and treatment side effects that affect our looks.

 

During my life with lupus, I’ve lost all my hair twice. I know how devastating it can be. To feel better and to try to look my best, I’ve worn hats, wigs, hair extensions and different haircuts. I’ve also gotten much better at putting on makeup to cover dark circles, rash or a pale facial complexion. I’ve found that practice makes perfect when it comes to hair and make-up techniques. A fun idea is to invite your friends over for a “girlie make-up party” to share tips and to get advice. When I see hats on sale, I buy them. I do tend to like Fall or Winter style wise because you can wear such a variety of  hats or scarves, ear muffs etc. that all camouflage a bad hair day. Having admitted to my hair obsession since the first time I lost my hair to chemo, I will admit that is where I am most personally sensitive but each of us have our own little insecurity. My friend Stephanie goes tanning even though she is not supposed to because she just loves the warmth, but most off all she likes how her skin looks tanned and how according to fashion tan=healthy and pale= sick. My friend Kelly can put on fake eyelashes like she is a pageant queen in 4 minutes flat! Her lashes got very thin on one of her medication treatments and never really grew back. For me my love affair with long, full hair never left, even when I lost my hair twice. I didn’t harp on it, but lord knows I didn’t love it. I wore hats, wigs and sometimes even rocked the bald look whichever mood hit me. Everyone thought I was handling it “so well” but all I really was doing was buying time for my hair to grow enough to get hair extensions. I first tried clip ins so that I did not have to make a huge commitment to them , I have tried varying types of permanent salon quality extensions and those can be expensive but I loved the quality, that I did not have to worry about them falling out and that since it was real hair I could style it as I wanted. Sometimes I took my time and straightened my hair, sometimes I just schrunch curled it, and other days when I am tired, it can be just a ponytail or baseball cap. We all have those little special beauty things we do for ourselves.

 

A funny shout out and review that I wrote for my hair stylist who does my extensions Storm from EastEndExtensions.com She rocks, is totally fairly priced does and amazing job and is completly supportive of the lupus community having just had been a big sponsor at my big fundraiser. She understands sickness and pain and what side effects do and she can help you find your best look. Love her.

I am always the first one to try a new hair thickening product, or make up, or lotion, wigs, hair extensions, headbands or basically anything from a Sephora Dream. I am always willing to be your guinea pig on this blog to try products, write detailed product reviews and always tell the truth.  I may think of things that your average beauty type blogger might not think of. For example whats the point in buying a fancy shmancy expensive bottle of lotion if as a person with chronic pain in her wrists I couldn’t open the bottle! Ha! Don’t waste your money!  I may love a new lip balm that keeps my lips super moisturized especially when dehydration  and dryness is a HUGE issue for millions and millions of us living with chronic illness.

 

Having written all this about superficial, beauty, make up and hair… It does need to be said that when I lost my hair twice I learned a vital lesson that I was not my hair. My hair did not make me the person who I am. It is not a part of my personality or character. I am creative, kind, funny, smart…but I am not hair. Hair is something I like to play with for style. Yes I do have a bit more confidence when I rock a huge head of hair with a fresh blow out, but it is not WHO I am.. not if I don’t let it.  Somethings can make me feel pretty, but they are not my passion. Some beauty tricks feel nice especially on bad flare days, but nice is not a necessity. Take care of YOU, and you will always look your best…. the rest is just glitter.

 

 

What are some ways you’ve learned to camouflage the appearance effects of lupus, beauty tips, products  and tricks or just to help make you feel and look fabulous? Comment below, or join in on the conversation on twitter or Facebook.

 

 

 

Author: Christine Miserandino

Christine Miserandino is the founder of butyoudontlooksick.com. She has won numerous awards for her writing. She has been featured in newspapers, magazines and television. She was a guest expert for Alliance Health, LupusConnect.com and community TV host for WebMD.com. She prides herself on being a patient advocate, Online Influencer, and health brand ambassador but her favorite role is that of a mommy. You can find her at @bydls on twitter or on facebook. 

 

 

©2024butyoudontlooksick.com
  • cecilia

    One of the things that i try to do even if I don’t feel like it is to wrap my head. I generally wear a headscarf and it takes not very much effort and makes me feel a bit more ready for the day. I also is quite soothing for sensory overload.

  • Kathryn Beausang

    I too share autoimmune disease with you spoonies. It has been a long journey. Neurological stuff, fatigue, psoriatic arthritis, you name it! I am starting to transition to raw vegan eating, including juicing. It does reduce inflammation which as you know is the root of our problems. It involves finding a flaw vegan coach to make sure you are doing it right. I follow a couple on you tube. Tanny Raw is one of my favorites. I also found the perfect hair product that is all natural botanically based do you are not getting more chemicals to flare your system. It has been proven to regrow hair. My friend suffered from alepecia and has regrows her hair within three months. She is now longer loosing her hair in clumps. The product is a Monat. I decided to become a marketing partner. My website is http://www.riverwalk.mymonat .com
    Feel free to contact me! Your hairs will come back, guaranteed

  • Kathryn Beausang

    Hello Janna, I am sorry to hear your story. I too am a spoonie with NS Autoimmne disease and Fibromyalgia. My hair has thinned a few times for some unknown reason but generally has held its own. I was a redhead too but now it is white. It turned white in my 30’s. I found a new hair product that a friend that suffered alepea discovered. Her hair has grown back! It took a couple of months but now her hair does not fall out in clumps. I hope it is okay to share with you. The product is Monat. I will share my website with you. http://www.riverwalk.mymonat.com
    The products are all natural botanically based do you won’t be putting chemicals in your system! Feel free to contact me.

  • Brandy Serrels

    I have a disabling injury in both my knees, and even after extensive physical therapy utilize a cane on many days. I’ve started a small collection of canes, including one with a carving of my first dog as the handle. It gives me a safe transition into my disability and pain levels, while still being fun. I’ve also started playing more with earrings and necklaces, which can make me feel dressed up and pretty even when I can’t change out of my pajama pants.

  • orchid279

    Mine too and it is heartbreaking. My hair is always in a pony and it is like a rat tail now. I am thinking of clip in extensions. The docs can’t tell me if it thins from the pred or the lupus or the other meds. Very frustrating, but I do take gelatin and folic acid

  • Emily Jelassi

    Thanks for this Christine! My hair is most definitely thinning, but my doctors can’t figure out why. I’ve always had really thick, long curly hair, and it’s a struggle for me to adjust. I find myself putting my hair up more and more often simply because I don’t know what else to do with it! On the makeup front, I’ve never been a big makeup girl, but that’s mainly because my skin is so incredibly sensitive…every brand I’ve tried makes my skin all red and itchy. I definitely know the pale skin look. I have to avoid the sun (I don’t burn, I burst into flames lol), and have adjusted to that. I wish I could use the self-tanners, but they make me itchy too…

  • Janna Oswald

    I recently lost my hair to lupus and I never realized how important it was to me. I have not undergone chemotherapy, but I lost huge patches on both sides of my head from a lupus flare. I used to have long, thick red hair that everyone would comment on. Now I have to wear it in a ponytail and hide it from everyone hoping people won’t comment on it. It’s almost long enough to wear down, but not yet. The frustration of figuring out how to change up hair styles each day is exhausting. I used to be able to do anything with my hair and it would look amazing. My shower is currently full of many different types of shampoos, conditioners, leave-in masks, and I even resorted to using Rogain. Nioxin has a been a brand that has helped a lot. Their products leave my scalp feeling tingly and i’ve noticed even hair growth with it. I hate to say that my hair defined me, but it did, and losing it really hit me hard. It changed who I was. Now that it’s growing back, I’m feeling confident again, but it’s not something people understand until you have to go through it. Thank you for this post. This really helped me understand that hair isn’t everything, even when it feels like it.

  • walker

    I find that having something about the way you look that you really like is a great mood booster. In college it was this one pair of pants that didn’t look anything like any of my other pants. I would wear them on days when it was hard to get out of bed and go to class. Now it’s a good layer of foundation, or skin colored face paint as I like to think of it, that makes my skin look even in tone and pretty to me.

  • I was a makekup youtuber & fashion blogger doing airbrush makeup and when I got sick, I got scared of the makeup I was using. They couldn’t figure out what was wrong with me for almost a full year. By the time my diagnosis of Lupus, I’d lost 40lbs, none of my clothes fit (even my leggings are baggy in the butt) my eyelids are almost always swollen & I am known as the Hurricane In Heels who has reverted to flats because of the maddening joint pain. I totally related to this article on sooooo many levels I tell my friends and family that if you see me in a selfie, that was a good makeup moment lol I rarely airbrush anymore but as I learn to cope with my new life (just got my diagnosis about 3 weeks ago) I am optimistic about and appreciative of the good look days.

  • Michelle

    How amazing that your family and friends ‘get it’. Mine still don’t and I’ve had Fibromyalgia for over 18 years. Since I was diagnosed with FMS, I’ve since been diagnosed with Degenerative Disc Disease (broken T2), Myofascial Pain Syndrome and Chronic Fatigue Syndrome…and they still don’t get it.
    You said you know all the tricks in the book in regards to skincare and makeup, so do you mind telling me how to get my skin texture more smooth? I’ve tried exfoliating and it works for a day so I’d have to do it daily, but then my sensitive skin will get all red and irritated. I’ve tried shaving my face – kind of like dermaplaning, but with a regular razor and it kind of works, but not really. I like getting rid of all the peach fuzz on my face so that my foundation and powder look better and the products don’t make my peach fuzz stand out. I also have a great skincare regime and, at 43 years old, I have no wrinkles whatsoever. I have dry skin, so I have to be on top of my skincare or my skin feels like the Sahara. LOL
    Any help you can offer would be great.

  • Toni Chambers

    I’ve been told that I was the best looking sick patient that my doctor has ever seen….. the thing is though when people see me they have no idea what it took to look half way decent. .thank God the short natural hair is in style,because I don’t have the energy to even think about doing my hair.

  • Kim Metler Dassel

    PS to my comment… I’m always willing to share and help with tips and trick, if anyone wants.

  • Kim Metler Dassel

    I so LOVE this article, Christine! I was a cosmetics/makeup trainer for 30 years until my dibilitating fibro forced me to retire. I know all the tricks in the book, when it comes to skincare and makeup.

  • Anita

    OH is so understand you. I have basically the same illness as you but add major depression and borderline personality disorder. That means I get depressed really easy and on some of the bad days I can’t control my emotions very well- It can be bad. I do work a full time job but it is very easy and no stress. I also do my best to look good, even if I don’t feel good. As for the weight gain- yea fibro killed that real quick. I was a nurse up until the fibro started, so I walked all day and at home I worked out- I would practice my patterns for martial arts- I was at 13-140- always. Pregnant I weighted 165 tops. NOW I weight 200lbs!! no matter how much I try to loose weight it is a losing battle. In 2006 my weight went from 145 to 252 in 8 months. The first fibro flare happened and it took me 6 months before I could function. Since then with the meds I have to take and all, it has been a battle to lose weight. Fibro has totally stole my life- what made me. So I hear you and feel for you. gentle hugs!!

  • Tourmaline

    Me too! I also work in health care. I lost a lot of weight fast due to
    the medications I’m on and frankly I went from looking great to looking
    like hell. I’ve been the victim of vicious gossip and blatant body
    shaming about being “skinny.” I can’t believe how evil people are. I’m
    writing everything down in case they try to fire me, so I have a basis
    for an “ongoing harassment” complaint with the federal government EEOC.
    Meanwhile…I use a very subtle self-tanner to add some color to my skin
    and it does help. Eye liner, mascara, and lip gloss, plus getting
    regular salon cut/color makes a big difference.

  • Guest

    Kia, Me too! (Tried to do this as a reply to your post but couldn’t reply as a Guest.)
    I also work in health care. I lost a lot of weight fast due to
    the medications I’m on and frankly I went from looking great to looking
    like hell. I’ve been the victim of vicious gossip and blatant body
    shaming about being “skinny.” I can’t believe how evil people are. I’m
    writing everything down in case they try to fire me, so I have a basis
    for an “ongoing harassment” complaint with the federal government EEOC.
    Meanwhile…I use a very subtle self-tanner to add some color to my skin
    and it does help. Eye liner, mascara, and lip gloss, plus getting
    regular salon cut/color makes a big difference.

  • Love this! I have been on chemo treatment since September and have two bald patches now! I am lucky as I can cover them easily so far! Thanks for this! xxx

    http://thewolfandme.com/

  • Catalyst Spark

    Funny how bright and crazy hair colors can make you feel good about yourself, male or female, isn’t it? I’m the same way, or was, now I don’t have the energy to dye my hair anymore. Looking forward to when I can again so I can hide all these damned greys that are invading. I’m only 26, I shouldn’t be sporting this many greys yet!

  • Catalyst Spark

    Your co-workers need to shove off. If you’re doing your job, are clean and professional, that should be all that matters. I guess you could take comfort in the fact that, were your illness to hit one of them suddenly, they would feel about two inches tall for giving you grief about it.

  • Catalyst Spark

    Try the shampoo and conditioner called “Mane and Tail” it makes human hair grow like wildfire. It’s a horse and human product often used by ranchers who raise show horses but they discovered it is amazing for human hair growth and health and it’s totally safe for human use. Not too expensive either if you get the bigger bottles. I’ve never had to use it myself (My hair grows like crazy and is so thick it always stands up a bit from my head. Trust me, there IS such a thing as hair being too thick!) but I’ve recommended it to friends with hair loss issues, friends who’ve lost their hair due to chemo and really wanted it back and friends who just wanted their hair longer quickly due to cosplay or an event. That stuff does work and normally the result is noticeable in a month or less. It’s insane for just being a shampoo and conditioner!

    As for how I personally deal with the fact I look like something the cat barfed up most the time thanks to only getting sleep in two hour stints thanks to fibromyalgia pain, well, I kinda covered up most the mirrors in my house. . .I use to be this health looking, lively, 170 pound guy with nice physical tone who dyed his hair any crazy color at any time just because I wanted to try something new. I use to be a weight lifting nut who loved how slender I stayed even though I was fricking built. Yeah, I had some of my health issues back then, arthritis, crohn’s disease, sciatica, but I also had energy and I used that energy to push through and keep active and healthy. I thought that, since I already had a number of health issues, joint damage, back pain and the like but I was still able to do what I did, well, I thought I could take on anything and push through the pain. NOPE!

    Then I got sick, really sick really fast. My energy was gone, I no longer had the means to push through the pain, it didn’t take long for me to be able to hardly walk without a wall to support me half the time. For three years I just watched my body fall into this awful state not knowing why I couldn’t muster the energy to work out anymore or even to function properly. I kept trying to continue at least using dumbbells while sitting to do something but I fatigued so fast. Then I found out I have fibromyalgia. This dang illness literally ruined my life, my self image, my drive to live. Now, a year after diagnosis, about, we’re still trying to find what will work for me so I can get back the energy to push again and get back to how I looked before. The weight gain from being unable to be active has decimated my self image and my self worth to the point, I just cover the mirrors, I don’t want to see myself in this state. I hardly go out both because of how difficult it is to get about and because I don’t want to be seem like this, weighing 279 pounds, limping with every step, having to use a cane in cause something locks up on me, having these dark circles under my eyes, not being able to stand upright properly. I don’t want the world to see me like this. I guess the only thing about it all that doesn’t bother me is the being pale as a sheet thing because I’ve always been pale due to a sensitivity to UV, and I kinda like my skin being so pale because it’s different from the norm, but the rest of it really gets to me.

    I know that, as a guy, we aren’t expected to look nice and, yes, I likely could get away with going out and I wouldn’t face nearly the same amount of scrutiny a woman sadly would, but what this body of mine has become is not me and that’s why I don’t want to see it or for it to be seen. My depression about it has gotten bad enough without me harping over what others see when they look at me, I would rather not add that to the mix as well. It’s pretty much caused me to become a shut in and I hate it. It gets lonely and my computer has become the only real connection I have to the outside world save for a few close friends and my fiance’ who understand my situation.

    I don’t cope with looking like crap very well sadly. And I am really looking forward to when, and if, my doctors and I find a decent treatment so I can regain my energy and repair what this illness has done to me. Better believe, as soon as I have that energy back, I’ll be working out like a man possessed to get rid of this weight, and being able to sleep more than two hours will help me a lot too.

  • Lester

    Found the spoon theory on facebook, thanks it is a great way to explain.
    I look at this article and the normal thing comes to mind – so much of the litature out there for chronic diseases (R.A., Fibro, PN, Lupus, etc) are geared to women with the disease as the highest majority of the population with these diseases are women. But what about us men with it?
    It is something I struggle with, I while my hair is thining rapidly probably will never wear a wig, nor makeup. But how do I cope with the invisible sicknesses?
    As a man I am supposed to provide; even my own family forgets I only have a few spoons.

  • Lanie

    When people tell me I look good I say “It’s M&M’s” – Makeup & Medicine!!!
    I’ve had Lupus, etc., etc. since I’m 20 and I’m now, luckily, 64. It’s been a long haul.

  • Kia

    Experienced health discrimination on my job this year & I’m shocked because I work in health care & I thought there would empathy! People are more worried about how u look instead of how you feel…they stalk your social media etc….I guess every other post is supposed to say “I’m home sick again”

  • gamerchick

    Totally agree! I was diagnosed with fibro and cfs, and some days using my last bit of energy to make myself look good is just enough to keep me from spending a whole week under the duvet pretending the world doesn’t exist! I always wear my hats, because lets face it, sometimes I just don’t have energy or will power to even brush my hair, let alone wash it! But when I do have the energy, it’s dyed a plethora of funky colours. People think it’s for the attention, but really, it’s my little piece of happiness when I catch my reflection in a window and think “hey, that’s cool, I’m not quite an old woman yet!”

  • thecheekywolf

    I was diagnosed with Lupus a couple years ago. I had to deal with acceptance of who i am now plus the fact that my face look like the size of a fully blown up basketball. I really love your blogs, my mum recommended you to me.

  • East End Extensions

  • Thank you for writing this! I deal with fibromyalgia and that brings bouts of depression along with it. I find that even on the days I’m home, in my sweat pants, and just watching tv that just putting on my foundation a kiss of blush, eye liner and mascara can make a huge difference in my day. When I walk by a mirror I don’t look as bad as I feel and it does brighten my mood!

  • Lisa

    I feel the same! When I was diagnosed with depression and then fibromyalgia, make-up was my refuge. Even on the worst days, I could still look and feel pretty. It boosted my self esteem and made me feel good. Nothing wrong with caring and putting effort into your appearance – and loving it too!

  • Christina

    Love this story ty for taking the time and sharing it 😉 mine too is exactly the same as yours <3 Ur hair looks amazing & so happy to know im not alone in my hair obsession!! lol 😉

  • Monica

    While I was in the hospital my “make-up” was my facial skin care regimen. I needed to stay moisturized. I also made sure my hair was as done as much possible even if it meant being neatly pulled back in a ponytail. I needed these little things to feel human. Thanks for the opportunity to share.

  • Deb

    It’s a little discouraging to do my makeup and hair and go to work when I don’t feel well, just to have someone say “Are you sick? I can see it in your eyes.” That happened to me yesterday when I was having a CFS flare-up.

  • devri

    this hit totally on the mark for me. The worse I feel, usually the more effort I put in to look good that day. I always tell people despite how I may look, I feel like an 80-year-old lady.

  • neceyluv

    No, we are not what we wear or how we look, but it absolutely helps sometimes to help us to feel our best. When I was in the hospital with Guillain-Barre Syndrome, the nurses and physical therapists loved how I’d always have on earrings and lip gloss when I’d go to therapy! Surprisingly, they told me that no one else does that. My friends/family had brought me cute workout outfits to exercise in. Because of the paralysis, it was more difficult to comb my hair (but I tried!). I had to do something to make myself feel like “normal” again, like “myself.” When I went home a couple of months later, I even bought several bottles of OPI polish in the brightest, boldest colors I could find: reds, blues, greens, and yellows. For my fingers AND toes! I absolutely loved it (and still do). Thank you for sharing!

  • Ivonne M

    Love your hair! Mine is falling off daily. I too have my wigs and clip extensions and if need be I will get extensions. I love styling hair too much

  • SusanMary

    I can relate totally to this post. I have Multiple Myeloma (diagnosed in 1996) and have totally lost my hair twice. I have always had straight, sleek, bobbed hair. Now I have a frizzy, dry, uncontrollable mop; I could cry each time I look in the mirror. I am now on constant chemo and am too weak to do more than get in and out of the shower! Blow drying the hair is a rare occasion indeed these days. But oh how good it looks when I can manage it! I love to put on make up but my hands shake so much I can end up looking clownish. And the weight gain from steroids…..nothing can disguise that. The only trick I have found for dealing with all this is to sit down an rest! I don’t see me in the mirror any longer, it’s a stranger looking back at me. Thank you for all the wonderful posts on this site, I find it all most supportive and informative.

  • Christine Miserandino

    Whatever works for each person! I know a girl who isn’t a make up person or hair etc. But always puts a pair if funny colorful jazzy socks on every day weather in regular clothes or in a hospital gown!

  • Emma Freeman

    I use Body Shop Face Base. It is a compact powder with a little foundation in, so you just wipe it on, and you’re done. It covers a MULTITUDE of sins and makes my skin look amazing even when the rest of me is barely upright.

  • Ilana Jacqueline

    Fantastic and so relevant. I too have a make-up kit in my hospital bag. I’ve made myself a very glam vanity and try to do my hair and make up every day–especially on really bad days. It makes a huge difference in your attitude. Sometimes I’ll look in the mirror and it hits me “I’m sick and I look it” and it kind of knocks you down a few pegs. Nothing wrong with getting extensions (Or in my case ombre highlights!) to bring yourself back from the brink!