Pay no attention to the girl behind the smile -what I wish people knew about me.


Pay no attention to the girl behind the smile…

It has been said by many people that I am a very good actress. “But You Don’t Look Sick” seemed to be all I heard. Is this a good thing? Sometimes it is an appropriate thing to say after a speaking engagement, or when I used to act in class, etc. Most times I take it for the compliment it is, all the while smiling, knowing exactly what it doesn’t mean. It simply means I am not the woman/ the girl I was before. I “act” like a healthy person the best I can. I take on this role as if I will someday win an award for best portrayal of a healthy person. The downside, is that there is no trophy, there is no prize, I just end up alone with my feelings and everything I have kept inside. I act like I don’t care- but I do. I act like I am not scared, but I am.

Most people use the “acting” comments as a way to tell someone that they are outgoing, social, funny or even dare I say sparkle. There are those people who walk in a room and you know you want to hang out by them. Well, that is me. I have the funny story. I get groups of people up and laughing. I walk in not knowing a soul, and leave with everyone knowing my name. What they don’t know is that this really isn’t me. What you see is a very calculated illusion of the woman I want to be. I want to be everyones friend. By all means I hate the word illusions. I hate the tone it puts out there for others to decipher, but being plain old Christine is worse.
The illusions started small like putting on extra blush to cover up when my Lupus rash showed. Then I learned how to put on fake eye lashes to fill in when my hair started falling out. A little extra lip gloss goes a long way….It gets you farther if you remember to out it on. That is just some of the tips and ways of my disguise.
Now comes the real “art of War”- the real plan of attack. Before I go anywhere, I need to know if I am even able to drive. If I am not, can I get a ride. I need to plan to pack a huge (but cute) pocketbook to make sure it holds all my medications that I need, and my “in case of emergency” type things. Now with all this time that has past- I am already late to wherever I want to go. But now I still have to plan the outfit from the feet up, and base every choice on how good or bad I feel. Should I wear my hair down? Or is it falling out and maybe more will come out and embarrass me. Should I go spray tanning, or go all out with the make up to cover for the fact that I am a walking zombie that needs many layers of blush and concealer. Now onto the clothes…. well, will it be hot? cold? Does this night involve alot of sitting (ouch-pain) or standing/ walking which could put me in worse pain if given the wrong choice. Don ‘t even get me started on the big shoes decision.
I would rather say that I am fashionably late to a party by making up some lavish crazy story, which then draws the conversation close and the intensity closer. The truth is, If I was to ask you if you wanted to hang out with me – I know I would not be your first choice. I am not saying that to gain sympathy. I am saying it because everyone wants to mingle/ hang out with the sick girl— But god forbid something grows out of that chance meeting…. what now? Now I need to worry about if this person can handle my life, my choices, my energy highs and lows, The billions of things I am forced to obsess over on a daily basis. Normal healthy people obsess over shoes, shopping, what to eat, make up, TV shows, whatever. Don’t get me wrong… I enjoy all of those things too. I just can’t obsess, because I quite simply do not have the energy or time, or dependable pain free day to count on. I have no choice, I have to live my life different from everyone else around me. I have to think about just getting up out of bed. I need to think about my medication. Do I need to stand for long periods of time? Where is good for me to eat, transportation etc…. Just so many little things that people do not put much thought into at all.
I have thought about these things so many times, it is like living in a different world, with different issues, different priorities, and an entirely different language that I can only speak. There are times when I do let go and speak to my sick friends and it feels like a light bulb has gone off – or maybe a switch has been turned on – but I feel a level of understanding and pure comfort around the people who understand both me and the “acting” me. They know me both. They know that with me– you get the real and the fake- just to survive. If you are a good friend you can dig through the illusions and the crap and find me somewhere inside. What can I say, It is the “secret society of the sick” and I am proud but not lucky to be a member.

I hate people seeing me when I am sick and especially when I am looking sick. I really hate being pale, with faded eyes and with splotchy skin and bad hair. At least I know that some of these things are things I can work on, but others- they just are. I can’t make this big red blotchy rash go away. So I wear loads of make up or clothes that cover it up. That is my official secret. I am out! I choose what to wear based on how bad I look. I choose where to go, by how far is it. Can I safely drive there, will the people there want to see me and be happy or excited? Will I be able to leave without any financial issues or friendship ramifications. I hate walking around in public with a limp, or worse, a set of crutches, a cane or a wheelchair. I hate not being able to wear tall sexy shoes, because I can not walk in them. I hate trying to quickly think of the much cooler reason for having a cane, or wheelchair. I hate that I don’t know a cooler reason. I desperately wish I was cool.
Big bags are trendy right now. Which is great and very convenient for me as in this role I am playing. My character wears big bags that hold lots of stuff. No one would ever know what is in my bags. Unless one spilled over- which is a nightmare I have often. I pack up every possible medical bottle or device. I pack all kinds of makeup to make me look less ghostly. I bring emergency phone numbers, I bring EVERYTHING.
I do love my life, but I hate alot of things lately.
I hate having so much to say, to blog, to share but my hands hurt too much to type.
I hate popping pills, and having people ask me personal health questions that I don’t want to answer.
I hate that everyone thinks any time they talk to me is another opportunity to give unsolicited medical advice.
I hate living up to other people’s expectations of what a healthy person should be.
I hate living up to other people’s expectations of what being sick is.
I hate thinking about how or when I might die, because for me it might be a “when day” and not a “someday”.
I hate never feeling good enough, quick enough, pretty enough, or just “enough”.
I hate the term “damaged goods”.
I hate that I know my doctors better than I know my friends and some of my family.
I hate that no matter how hard people try, (or don’t try) They will never know the loneliness of being in a crowded room knowing you are the only one who tells time by pills, energy and spoons.
I hate people that are inconsiderate, and make plans without thinking of walking or come by unannounced when a phone call can help you so much.
I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not
adequately describe how you are feeling and they belittle what pain and sickness I may be feeling.
I hate having to defend that I am a good mother,  daughter, sister, or friend.
Most of all lately, I hate people who judge, and give me advice, or questioning stares of how I handle my diagnosis, or my life.
Basically I hate letting people see the effects of my disease. I don’t care if they know that I’m sick, I just don’t want them to have to see it, or deal with it.

So I don’t let them. In a funny way this puts me more back in control. I get to pick who knows the real me. I get to pick who to share my soul with. I decide who to let in. This isn’t a pride thing for me. I don’t worry about people thinking I’m weak because I know I am stronger then I can even imagine. Despite my disease there has been nothing in my life that I didn’t want to accomplish that I didn’t find a way to. It is like the scene in the Wizard of Oz when the wizard (talking about himself, in a big booming voice) “Pay no attention to the man behind the curtain”. When you watch the movie- everyone knows that the little man and the wizard are one in the same. But because of his presence, his knowledge and might I even say his Sass, the people want to believe in him. He hides his flaws with his smarts and pizazz. My main reason for hiding my disease is that I don’t want a watered down life. I don’t want the simplest option given to me because somebody thinks I can’t handle any more. I want to decide.
I want you to like me and love me because I am a great person, not despite the lupus- but maybe because of it. Maybe having this disease taught me the skill of being a chameleon, mixed with the communication skills of a great counselor, added to a touch of structure and organization from living by the clock and the pills. Maybe I am cautious because I am scared. I live in two worlds- the world of the healthy- where I put my best face out and do anything my heart is set to and I also live in the land of the sick. Here I am understood, but I don’t have that much fun. I worry, I rest. I follow rules, and I live a life in pain. The unfortunate thing- is you really can’t live for very long in two worlds. It is a dizzying, exhausting dance to be two different people. I guess I have grown up a bit. I quite simply do not have the desire to act anymore for you. This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.
I am doing my best.
I want to have one world with one life- no acting- just me. I make no excuses any more for my choices, my feelings, my health. I am trying. I am me.
I wish I could tell you all this and more, but sometimes I think the illusions are easier for you to live with. Let’s make a deal, you can pretend I am healthy, and I can pretend I am happy. I am sure it would work for some time… but would it really be working? Do you really care “How are you feeling” when you ask? Or do you want to he me mutter “fine.” There are so many things I wish people knew about me, but I won’t say, because you don’t ask and when you do, you’re not truly listening.

Pay no attention to the girl behind the smile…

Article written by Christine Miserandino, ©

  • Andrea

    Today is a bad Lupus day! I came upon your web site through a friend in my lupus group and am so grateful! You put it all together! Thank you! I am shaking on the inside and can’t control it. The weather is against me and everything hurts right down to my toes. I’m always positive and today I can’t just seem to grab the bootstraps to get up! I read this and said get going handle your life, take some meds, lie down and you will get better! I want to live! Stop obessing and focus..focus for all those that have an auto-imune disease and stand tall…WE WILL MAKE IT NO MATTER WHAT!

  • Purplelawlady

    I would like to honour you with the Fibro Fighter Award (
    Congratulations! Please feel free to recommend other bloggers whom you think worthy of this tribute

  • great post! really liked it!

  • xSassySusiex

    I did that too, for years, until I got too sick with too many things all at the same time and it has taken several years to recuperate from them all. I hid everything from my children when they were younger and living at home which was the worst thing I could have done. Now, as adults, they do not understand why I’ve been so sick for so long and some have zero empathy and one deleted me from his life. That can be the sad result of “playing the part” of a healthy person. Of course, if you let everyone know that you are sick then you lose most of your friends, and maybe family, over time anyway. Sad but true. There is no middle ground it seems.

  • Rosaerona

    This made me weep with pain and joy. To hear someone say so very clearly and beautifully what I feel everyday but can’t express was amazing. I have cf, diabetes and asthma and have major trouble with fatigue and it was like you are describing my life! Pretending everything is fine, acting a part. Feels so good to know other people feel this way too, I feel less alone than I have in ages. Thank you so much

  • I have found my kindred spirit, this Christine. All the websites are about ‘lupus doesn’t have me… ‘ if you have it like you and I do, yea, it does. I collect wizard of oz everything… I guess we all are wishing to fly with them bluebirds again. I have 38 pair of red shoes. I still walk on 7 inch stilettos even if I’m on my cane, even if it makes me cry. I identify with the wicked witch… Elphie. Something tells me you’ve read them all too. I’m all elbows and knees and long skinny nose… The marvelous hot springs spas so close to my home, any lake or pond, water not chlorinated, gives me horrifying red rashes… Does it you? And I’m spiraling toward a meltdown I can’t stop. I refuse to give in, too. I rode my harley to sturgis from arkansas in 09, puking methotrexate the entire way. It was on my bucket list. So is the autobiography I wrote. There are a million things I want to say to you, to reach out and touch your hand and tell you that your life is almost exactly like mine. Your words blow me away… You are speaking my heart and soul when you write, woman.

  • KIM

    This is my partial life as well…I try really hard to look and act like there is nothing wrong in my life. My health issues started in my early 20’s right after my son was born. I am finding it really hard to put all my thoughts and feelings into words. Reading your story made me so emotional, as it totally hit home for me as well. Most of my life has been quite the performance!

  • Lori Cavanvugh

    @ MaryAnn—I am 52 yrs old and have been on Medicare for 2yrs. due to disability. If you have worked and no longer can—get a lawyer (they won’t charge you unless you win) and apply for Social Security Disability…In my case, my lawyer and I won my SSD and got Medicare 1yr after receiving my SSI rating.
    This can be done—it’s a pain in the ass but if you’ve worked you deserve Social Security Disability and Medicare…Please look into this, you may very well qualify…
    Lori C.

  • SharonW

    Well, I could not have imagined that there are so many people that I have something in common with; severe OA spine, ankles, knees and now I am struggling with my hands. I have granddaughters that are young and I have so much to teach them yet. God just please give me a little more time… I also suffer with FM and dystonia. I always look so good, the best dressed but I cannot tolerate the heat of summer I wilt quickly so I decline invitations, maybe it’s all the meds. Yup I have not slept in 3 days for more than 4 hours at a clip. Many nights I don’t sleep at all. I can’t drive and cannot tolerate long car trips so I don’t get too many places by myself. I would love a nice stroll through the market, anywhere. I am a browser by nature but I can’t keep the others waiting. Oh the doctors. I have a GP, neurosurgeon, orthopedic, foot and ankle (sports med), pain management (specialist), oh and you think I should add another to the pile, this one knows better than all the others. I hear it all the time. I once went to a rheumatologist and he told me that we both know the ropes and there was nothing he could do to stop the progression of the osteoarthritis, he would sent me to the specialists when needed anyways. He would not take me on he said I was smart enough to know when to go to a specialist myself and there was only PT and meds to try to make me more comfortable. He was a big time specialist highly recommended to me.
    So we are all in the same sinking boat. The last MRI at my GP’s the nurse called and said, once again, it’s only “ole arthur” and I said “excuse me?” She said “you know arthritis” and I let loose with ” I am 54 years old this started when I was 48. I have had 3 back surgeries and am facing a possible neck surgery! I have had bilateral elbow surgeries and 2 bilateral carpal tunnel surgeries because he thought that might help! I am undergoing injections in my knees! This is not just “ole arthur” and don’t ever use that term with me again!” She was sorry and said so and is very careful with me these days, she must have a note on my charts.
    I thank God every day for my daughter, she is a saint and God sent. My grand children keep me going I would be lost without them. We must try to focus on the good, there has to be something good somewhere to focus on.

  • Lisa

    Thank you so much for your article. I just wish the “well” people in my life would read it and really understand it. I totally agree with everything. I love the spoon theory. A person could hold enough spoons in their hands. The worst is being alone alot. I thank God for my my faith or I dont know how I would manage day after day. I am a sensitive person so this only makes it harder. I get sick of people saying well you need to try this or go to this dr. Dont you think that I am trying everyday to find something that works?? I hate that I have to pay to go have dinner or get sick and have to leave. I can’t believe all the people who have walked out of my life because they dont understand? Do you think I understand? I am so afriad of people and know that their words really hold no value. Its best not to have any expectations. I hate to say this but if I had cancer there would be an outpour of sympathy and my situatuion is no different.

  • Ali R

    How come it is only women that respond? Is it because we’re the most likely to get these diseases? Why is that? Is it because men just don’t go for this type of stuff? Demonstrative affirmations of our weaknesses?

    Hurting today. Fortunately I have a job I can do from my laptop. My bosses don’t understand why most weeks I can’t put in even part time hours when I don’t even have to get out of bed to do it. Well… when you’re only awake 6 hours a day…

    I haven’t bathed in I don’t know how long. I don’t have the strength to stand in the shower and I can’t find enough time to sit in a tub and then I’ll be so cold for so many hours (thanks Raynaud’s).


  • Toni Somers

    Today I was having the usual bloods done and my nurse asked how I was and to be honest instead of “fine” I said I am struggling just now …she then asked if I had ever heard of “The Spoon Theory” I had no clue till she explained about your website…So you are here in a small East Coast town in Scotland 🙂 I have read the theory and so has my 13 year old son and it is so true..I have been reading above and it is me in sooooo many ways. I was diagnosed in 2007 with rapid onset Rheumatoid Arthrits then in 2009 I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome so I am a newbie. I have been unlucky with treatments and am on my 10th RA drug already apparently me and my body are “unusual” not surprising to mu Hubby….But we are lucky in the UK we do not have the worry of finding money for healthcare. But the things you hate are so true….I do feel like an actress my makeup, hair and clothes are my costumes I can look ok or the usual “You look well” quite convincingly but they don’t know it took 2 and a half hours to look this “normal”….I am lucky though I have a wonderful husband who is now my carer (although this change has been difficult to deal with on my part anyhow) we struggle but we are ok my kids are great my youngest is 10 he doesn’t know the me from Pre 2007…Brennan is 13 he has memories from before weirdly I can deal with the funny looks I get using my crutch (which is a lovely gutter one) and the abuse when I park in the disabled spot (even with my badge) more than talking about how it affects the boys…But I have learnt who my real friends are and have realised the only people that matter to me are my husband, kids and friends and family..The rest are nothing I know this is not where I wanted to be right now but I have learned only I can control what happens to me and I cannot change anything unless I do rather than moan about it so I became involved in support groups which is how I have met some amazing and inspiring friends I am now a facilitator for a small group but it doesn’t matter we have each other…Thank you for sharing and much love from Scotland..T xx

  • Esther Mitchell

    Christine —

    I wish I could give you a big hug and say thank you, from the bottom of my heart. Your words express many of the same sentiments I’ve tried so hard to convey to people who just don’t understand.

    No, I don’t have Lupus. I have Porphyria, and I live in a desert, surrounded by sun and stress. And I know what it’s like to have people judge you based on how you look, rather than understanding how you actually feel.

    I went 20 years without a diagnosis, so I learned a very long time ago how to wear that mask that covers over how badly (and how often) I’m in severe pain. I couldn’t agree more with you about being tired of and hating having to wear masks, having to defend myself in front of people who don’t understand why I just can’t do whatever they want me to, when they want me to. Who don’t understand how carefully I have to plan my day based on the energy I do have, and how terrified I am of having an attack.

    So I just want to say thank you… Thank you for sharing your story.

  • I have had arthritis and fibromyalgia since I was 16 and have not been able to go were I want to or with thw pain have been on painkillers all the time until I just decided to go with the pain instead of being in fog all the time. I stopped taking the pain meds 4 or 5 years ago but I am still in pain and sometimes in a fog from just the pain. People always ask me how I am and I just say I’m fine, because being fine is all I want. I don’t like to tell people that I’m in terrible pain, cuase then I think they think I only want symphany. Just take it from me I don’t look sick but I am. I also have diabetes the unseen killer. So I just take it one day at a time, and just pray I’ll live to a ripe old age.

  • Natalie

    Perhaps because I came to a state of disability later in life, and was quite active and able for most of it, I have a very different take in my disability. I have fibromyalgia with its attendant chronic pain, fog and exhaustion. I also have spinal injuries from a long martial arts career, amplified by osteoporosis. I don’t remember the last time I wasn’t in pain to one degree or another, mostly in the moderate t severe range. I do work, though with many adaptations and a limited schedule. But rather than a burden, I see my disability and pain as a gift, one that allows me to look at others with eyes of compassion and love. I never ever have the dubious luxury of taking good health and a pain-free life for granted. Because I was not always disabled I understand why others are oblivious to my challenges. Furthermore I am glad of this, because it means their bodies are not suffering. It is not their responsibility to understand me and my life, it is mine. No one is obligated to empathize with me or to ‘feel my pain’. I wouldn’t wish this on anyone (okay, almost anyone; I DO have my moments!), though I admit I do sometimes wish that for just a day or two, some people could feel the way I do, just for the sake of perspective. So rather than hang out with people who can run about and not pay dearly later, I have collected a wonderful circle of friends who have much the same issues as I do. This helps to balance the times such as being at work when I can’t avoid people who just don’t understand. After all, I already have constant pain that I don’t have a choice about. But I CAN choose whether or not to take personally other’s insensitivity and judgment. It is not always easy, and I certainly don’t do it perfectly, but knowing I have a choice about how I look at things and what I believe about them empowers me in so many ways. I highly recommend The Work of Byron Katie. This method has freed up tons of energy that I used to waste on the belief “They should understand me”. Awesome stuff, I encourage everyone to check it out!

  • Leah

    I just read this for the third time since I joined the bydls community.. i need to post it to my fb because this is EXACTLY whats going on in my life right now.. i couldnt have said it better.. once again christine, you, my dear, are amazing. I’m sorry it took an illness to bring all of us here, to this common point of understanding.. but i am very happy to have found you guys

  • Irene

    Thanks a million for writing this… I agree that when people ask how are you? my answer would take up the rest of their day! I’ve had Systemic Lupus and Firbromyalgia for 28 yrs. and I should get the Academy Award! The awful fatigue and foggy feeling is hard to explain to everyone. Most people say, “I’m tired too!” They just don’t get it… I tend to only call my friends who are sick because they truly understand. I’m tired of spending so much time alone when my other friends are at the movies or out to dinner.
    Whenever I start feeling “human” for a day or two it’s like a tease for me, and then BAM! pain all over and barely moving.
    Thanks again.. I would hug all of you, but I don’t want to cause you anymore pain..

  • Karen Maurer

    I’m so glad I clicked on this tonight! I can relate to everything! Regarding the “acting”, or putting on a good face; I was told by my former therapist (notice I said “former”) to “snap out of it”. Hmm… Apparently, I wasn’t being my usual vivacious self! 🙂 I’ve become isolated not only due to my illnesses (Fibromyalgia, Chronic Fatigue, Arthritis, Panic disorder w/Agoraphobia, depression…), but also because I’m caring for my mom, who’s 83 and has Alzheimer’s and brittle diabetes. I live in fear of having to place her in a skilled nursing facility,not because I couldn’t use the rest(understatement there) but because the kitties and I would then be homeless. In truth, I’m just barely getting through each day. And hey, if someone wants to drop in unannounced, and won’t go away (as I hold my breath and pray they do) they had better not judge me for still being in my PJ’s in the middle of the afternoon, or for the house not looking perfect! I also like your last comment…I’ve also concluded that even people who I think “should” care how I am don’t really want to hear the truth. So I’ve decided, until further notice, that I’m “just fine”…really! 🙂

    Wishing you all peace, hugs, and a boatload of spoons,

  • Kimberlee B.


    Its as if you wrote this for me right down to the wizard. I can’t believe another sole is out there dealing with the same hell I do everyday. I was diagnosed with FM, DDD, spinal stenois and several other things after a fall at work. I was finally approved for disability last year when I turned 50. Divorced and raising two kids I have decided its not worth looking for ‘Mr. Right’ I just don’t have it in me and don’t feel its right to bring someone into my nightmare. Good to know I’m not the only one wearing two faces. Thank You so much for sharing your story. Gentle Hugs, Kim B

  • I feel your pain. I too suffer from a chronic pain condition and is sucks! They taught us in Nursing School about chronic pain but no one can truly appreciate it until it happens to them! I have people all the time tell me “why CAN’T you work” (watch my kids’ ballgames…..the list is endless) and I HATE IT!!!!!Does anyone in society REALLY think that I would choose this crap over what I had before pain???? I realize I am only 37 but I PROMISE YOU-I REALLY, REALLY AM HANDICAPPED! Just because I look like a “normal” person doesn’t mean that I am so please, don’t judge me by appearances alone!

    Also, to all chronic pain sufferers, look up the Spoon Theory-it is a very good way to explain to others what we go through on a daily basis!!!

  • Louise T

    Christine, thank you. You said it better than I ever could. I am getting the Spanish Inquisition from my family on my decision not to return to work. How can I return to work when I am getting so little sleep and in so much pain? It is the hardest decision of my life because I have never not had a job. I don’t know what to do. I had to be hospitalized after my last visit with my parents and my sister, all because they don’t understand. They think I am lazy.

    I am so sorry you are going through this. Life is damn hard and it is unfair. I wish I could make everyone better. Just one use of Harry Potter’s wand. Just one and I would heal us all. There are people that care about you and people whom you don’t have to act with. Sadly, we are on the other side of a computer screen.

    Take care and thank you for so eloquently explaining what it is like.

  • This is amazing….thank you!!

  • Ness

    When I was still well enough to work I used get people ask me if I was alright when I didn’t wear make-up. When I had make-up on I didn’t get any of those comments. I actually have stopped wearing most of my make-up to doctors appoinments because it masks symtoms so well. As for spray tans, I’ve learned to embrace my paleness. And let’s face it, it’s not like I’m going anywhere….

    Great writing, always good to know you’re not the only one!

    take care, ness
    (ME, controlled Haemachromatosis, fibro)

  • Tricia B

    Wow! I know how you feel. I have another”rare” condition and don’t want to be a whiner so don’t tell people when I’m in pain, etc. It’s hard to look normal and feel terrible or to look terrible and have people look at you wondering what the heck is wrong with you…but not ask or when they do ask and you try to explain, they just shrug it off and say, “yeah, I have aches and pains, memory problems, etc. too, maybe it’s just normal aging?” I want to scream,”I’m 49, I feel like I’m 80!”

  • kim cochran

    I am so glad I came accross your article…It truly explains how my way of life is as well..I have full body RSD and I am in considerable pain,most days. I try to hide the pain around my friends and family but there are some days that they can see the pain in ny face…My biggest problem is when a friend tries to get me out of the house and invites me to a luncheon or get together with other people, and I act through the entire evening, only to have the other guests say to me….What is it you have? You seem so healthy to me and you look great. I feel like they think I’m actually faking an unbelievably painful disease…Sometimes it is the same person over and over at each event that says the same thing… You look too good to be sick…What is it you have again? never heard of it!!!! I then go home and hide under my covers for another few months til I brave the elements again, only to have the same experience..I think I must be crazy to sit there in pain and pretend that I feel great for people who are truly ignorant to this disease…I do it because I want some kind of life outside my bedroom….I’m in pain 24/7,…it’s just the level of pain and swelling that may differ…
    I Thank God for my wonderful husband that is there for me every day, I truly wouldn’t make it, if it wasn’t for his kindness and compassion.
    I wish all of you some painfree days,soft hugs to all of you.


  • Nanci Tomasetti

    Wow! You took my breath away. I’ve had my illnesses (lupus, fibro, Reynaud’s, Sjogren’s and Diabetes) for many years and have struggled with being sick. I am blessed with a wonderful husband and good friends but my closest friends are the ones who also have chronic illnesses. When I call them up and say something like “my hair hurts” they just know I’m in a flare and are there for me. Sometimes we must act the part; other times we have to tell it like it is. Time and time again I’ll be told “I know you are suffering and going through alot but boy do you look good, you don’t look sick.” I usually answer that “it’s the steroids.”
    But I do have a question: has anyone else been using spray tanning? I always HATE how pale I am during the summer but I’ve been scared to use spray tans. Are you guys using them? Do they bother your skin,etc.? Thanks for any feedback and hugs and spoons to all of you who need them.

  • Kristin

    Thank you. Many times over!! I felt your words were talking to my inner me- you brought me to tears –

    MCTD –
    Lupus ,arthritis, celiac, perhifial neuropathy and much more they keep adding.

  • Globalmom

    Excellent and so well written. Your last line says it all when it comes to family and friends.

  • Suzanne Reed

    Thank you for this article, Christine. I hope you’ll continue to be just you, which is just fine.

    I identify with a great deal of your statements made here, so I guess I get to join the secret club too. Looks like I’ll be in good company.

    I’m grateful to you for being able to speak so clearly and descriptively about what trying to live with chronic illness is like. (Fibro here.)

    Here’s praying for your comfort and peace.

    Suzanne Reed
    Nashville, TN

  • Patti Watson

    Thank you for writing this. I hear all the time “but you look fine”. Yeah but underneath I am burning up! I suffer from full body RSD. My pain waxes and Wains and some days are better than others. Thank God for my husband who does his best to understand!! He is such a lifesaver. Thank you again for making me realize that I am not alone!!

  • I couldn’t stop nodding my head reading this! It seemed to be describing me! You keep hitting the nail on the head. And still people will not get it. Here, the “spoonies” understand. And we thank you for your writing because it helps to know WE are not alone.

  • Jeanette

    I am so glad you managed to put this all into words. Every one resounded with my own experience. I don’t want to be sick all day every day either, I hate it, but I have to live in this world of healthy people, and so, yes, a lot of acting goes on. A lot of pretending to be “fine”. Because either people can’t cope with the reality, or because I am tired of being “the sick one” and just want to be “normal” for an hour. Also trying to just put one foot in front of the other, and often tripping up in the process… J x

  • Eyal Fischer

    I am on the other side, member of the healthy group, reading how you feel amazed me because I read /heard/lived it all before. It’s so much the same of what I got from my most precious friend that has MS. It is so hard to look the other way when she is “bad”because I so want her to be “good” I pray for myself to have the patient and wisdom to relate to her and treat her without offending and hurting her because god only knows, that is never my intention.
    Thank you Chistine for sharing what you feel and think and putting it down so clearly and simply, I now feel I gained more understanding which will help me better interact with my precious love, I will be an even better angel to her, I promise.

  • Bettina

    Thank you, Christine, for putting into words what so many of us live each day.
    I think often times we feel like we’re whining if we tell people how we feel. Do they really want the honest answer when they ask “how are you”? I don’t think so.
    I don’t reveal what’s behind the curtain to anyone; not my co-workers, not my boss, and definitely not my husband and kids. They don’t want to know! I refuse to let myself be judged by all the things that I can’t do as opposed to the things that I can do. It is always a surprise when I have to use a cane to walk or can’t turn the pages on a report because my hands don’t want to work that day.
    I try not to whine. I try to hold it all in and not bore others with my endless complaining. My husband says it’s not fair to him that I hide the truth; I see it as not being weak and whiney.
    If I told someone every time I hurt or every time I felt like I was about to collapse from exhaustion or didn’t think I could face another day, that would be all I would ever talk about. And it really wouldn’t change anything.
    So I paint on a smile that never quite reaches my eyes. I do the little things that make me feel like I’m still a girl (like curl my hair and get my manicures) and keep putting one foot in front of the other. Sometimes the foot drags on the pavement but still….

  • Vicki

    What a brutal but accurate account of living with chronic illness. Hats off to you Christine for writing this article. I have Fibromyalgia, Chronic Fatigue Syndrome, migraines, severe depression (go figure), and spinal disease and can really relate to you. Have you ever considered starting an on-line support group for people like us ?

  • Sonie

    Thanks so much for this article.A lot of time I feel like I am the only one with the problems. I’m sorry you have the health problems,but an very thankful that you can write your thoughts so clearly. I really can identify with what you write.Thanks again.

  • Lara

    “so I don’t let them in.”
    No one gets it and it’s too exhausting to explain, justify or quantify.

    I also hate spending eight hours composing a letter to the escalation dept of the health insurance co to fight a claim denial.

    I don’t tell family the ugly details but I gotta explain, justify and quantify to strangers?!

    Thanks for nailing it on the head

  • Carol

    Thank you for being honest. Each new day is a surprise. I’ve learned by now to go with that, though sometimes the pain and depression get the better of me and I complain. And yet when I mention to those of my acquaintance friends about my health problems, they have no idea what I’m talking about. I evidently come across as healthy. Fine. Guess I’m an actress, too. I don’t need the attention. I remain a hermit most of the time because of one car and why expend my energy on outside activities when so much is to be done inside such as my freelance editing service, writing, cleaning, washing, sewing, knitting, etc.
    Thank you again for writing.

  • Lea Sapsford

    I read your article and recognised me straight away. It’s so nice to know that I’m not the only one in this “secret club”. Thank you for writing this and hopefully “well” people will read this and give us some understanding and support.

  • Karen

    Christina, thank you so much for sharing your story and helping other people who are struggling like this. I totally relate to your story. I was actually a professional actress for many years and even though I am sick I am still good at ‘acting’ now. I have heard you don’t look sick so many times and most of these people have no idea I am in so much pain, I was getting sick that morning, etc. My son also has a chronic illness and I hear the same thing. Sometimes I just want to hide with him somewhere so I don’t have to hear these things but another part of me wants to nicely educate people so they understand. I really admire you for taking the time to share your stories. They help so many of us. I also have chosen who I share with as it hurts to much to be judged some times and hurts even more when it is my son. Best wishes to you and lots fo hugs.

  • Melissa

    It’s so nice to read this and know that I’m not the only one. No one really knows how much pain I’m in most days because I don’t let it show – I don’t want to let it show. Thank you for writing what I was thinking.

  • Wow, I have mitochondrial disease and I swear to god this is like you just wrote my life. Thank you so much for sharing. You have touched my soul.

  • I couldn’t have said this any better. I’ve struggled with FMS & CFS & other stuff for so long I really don’t remember when I felt well or wasn’t in pain. I also hate having to put on the show face so others don’t have to put up with my illness. But there are days when they can see the pain written on my face. They know I’m ill now because I am no longer silent about what Fibro, etc people go through. I have too many friends with this same illness not to speak out. I lived for years in silent misery but though I may still be silent about how my misery & struggles are, I am no longer silent in how it effects us on a day or moment-to-moment basis. The world needs educating on how to treat those with invisible, chronic illnesses. We shouldn’t fear how we are perceived, it is only through educating the masses on this can they be more supporting and understanding. Tender hugs to you all and thanks for the article, Christine!

  • Maureen H

    Having read all the comments above i just wanted to share something with you all. We are all coping with serious illness every single moment of our lives with no respite and probably very little support and understanding.
    But i am damned if i will allow people to see me at my worst just to prove to them that i am ill.
    Only one person has seen me at my worst and it scared him as he saw me completely comatose unable to move for days on end.
    I banned him from the bedroom a lot of the time because this was not his illness to deal with it was mine and if i was left alone to get through it until i was back on my feet again i would be back to the “normal me” as the strong minded, mind over matter kind of person i am. I live alone now and cannot/do not get dressed if i am unable to, i don’t force myself anymore. I have had many serious relapses over the years and its taken months and months to recover.
    But like i said earlier why should we have to be seen at our worst
    To prove we are ill.
    I let my private specialist write it all down for me then let the family read it…. It soon clarifies things for them because she tells it just as it is and does not mince her words..she sends copies to my GP and even he has started to take notice of me and her.
    She even got my disability claim reinstated as she told them in no uncertain terms just as it is for people like us.
    Just wanted to say hope everyday is an improvement for you all x

  • MaryAnn

    OMG….. I love this so much. Beautifully written by someone who knows what I’ve lived for 24 years. I am so mad that I have to say I’m sorry to my 3 daughters constantly. I taught them compassion. I don’t know what lesson I missed. I guess I need a big horn protruding from my forehead to prove I’m sick. I would like to know from any of you out there how do you handle the comment “It’s all about you”. Sorry, but I’m in here and at last count no one has came to help me do anything in my home or caring for my 86 year old mother who is non-ambulatory in a wheelchair. Disability has turned me down, I am 50 and too young for Medicare but can not work because of pain and cognitive impairment. I have a lawyer, still no disability after a judge says I can put widgets in a box for Work. I am a Certified Professional Coder by trade, if I transpose numbers (which I do) I am no good to any medical facility. The only thing I have is a husband who is so supportive of me. Without him, I believe I would die. Thank You for expressing your feelings. I’m getting ready to fight back.

  • Angia

    Wow…couldn’t have said it better myself. Oh, sure, I know everyone is fighting some kind of battle, but I–like you, & so many others–am so tired of having to be 2 different women. It was as if you were seeing into my thoughts when you wrote this, Christine. LOVE the whole article, really love this part “It is a dizzying, exhausting dance to be two different people. I guess I have grown up a bit. I quite simply do not have the desire to act anymore for you. This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.
    I am doing my best.” And YES, I am tired of the constant questioning by people who really truly don’t give a damn how I feel or what I’m going through. I call it “The Spanish Inquisition”…and it gets OLD so fast! I am SO tired of what’s going on in my body, SO tired of fielding all the questions & stupid remarks & accusations people make, SO tired of the sheer ignorance of people/society, but mostly right now, I am just SO TIRED.
    Hugs & spoons & blessings to all…. I’m so thankful for this support community.

  • kathleen

    As soon as I started to read this article I said to myself-“My God-this is me, & my “life”….it’s sad that we are part of “secret club” that we never wanted to be part of-the article & all the comments did make me feel comfort-THAT I AM NOT ALONE IN THIS “club” & there are others out there just like me:)
    Happy,healthy New Year to all “my fellow club members”!!

  • Badia

    Thank you. (Immunoglobulin Deficiency, and other players). Thank you thank you thank you. Apparently a lot of us have thought of ourselves as lone Oscar winners out there. Thank you for voicing this and bringing so many people together. Cheers to you and of course, I and i think everyone hope the best for your health.

  • I do look sick, most of the time. And yet, the state of my health is ivisible.

    Making long-term appointments is a challenge, as you never know how you will feel the next hour, let alone days or even weeks in advance.

    Having to cancel a social appointment because getting out of bed that morning is all you’re able to manage that day.
    How do you explain?

    I put on my mask most of the time. Go well over my limits, because it’s just impossible to explain you don’t want to be a wet blanket.

    Even for my lifelong friend, I put on my mask.
    She tries. She hounestly tries to understand.
    But what is there to understand if you see your friend running around one moment and collapse the next?

    How do you explain that it is not the pain that’s stopping you, but the fatigue, that settles like a lead blanket over your whole being?

    After seven years of major healthproblems, I finally decided to show my friend, what life is really like for me these days.

    I didn’t cancel my personal care, only to discover that my friend considers it a waste of time, for my carers to care for my emotional health as well as for my bodily health.

    Her vision is that in these times, where care is short, a carer can care for another one in need of care, in the time they spend to talk to me and treat me as a human being, rather than just a patient.

    I can see her point. So many of us and so little staff to go around.

    How can you explain that you actually need to be treated as a human being in need of care, rather then a patient, to who care is applied.

    How to explain that you can cope with your pain fine one day and not the next.
    How can you explain that you are aware that the pain isn’t worse than normal, you just are less able to cope with it, because of the draining fatigue.

    How to explain that your scootmobile is a Godsend and that you don’t mind waiting a minitue for mobile people to pass, so you can conitnue on your way.

    That a minute longer in the shop is not important.

    Important is that you are able to go to the shop independently.

    How to explain to a medical team that you want to write down what’s being said, because your foggy brain can’t take it all in?

    How to explain your own daily battle with what’s possible and what isn’t, but still needs to be done?

    The choices you daily make on what and with whom you spend your limited energy on?

    Please be patient with us who are a patient.
    Realise where the word patient comes from.
    And realise that we don’t see ourselves as a patient, but as a human being, just like you.

  • Bethany

    Ellie–I think I’m going to post your comment somewhere to read when I’m feeling judged and struggle not to cry because of some heartless thing someone said! Apparently there are people out there who can love us no matter what. I always (inwardly) freak out when some person–anyone–sees me in pajamas, in a messy house and with the inability to put something into a coherent sentence. “I didn’t sleep well last night” really means, “This has been going on for a month, and I feel worse every day.” “I don’t think I can walk to your car today” means, “I’ll e out of breath and ready to cry by the time I leave my apartment, much less get out to the parking lot.” Sometimes I want people to just see me, since acting is absolutely exhausting, and I can’t do that with my limited number of spoons. Thank you for your encouragement, compassion and real understanding of what we go through. The other day, I went to a doctor who said two awful things to me: “You’ll have to find a new primary care physician if you can’t bring someone to each appointment with you–our office is very busy.” Hmm, okay; thanks, buddy. Note to sel: Never visit this office again. Then I said that I feel like I live in a ninety-five-year-old body, and he said, “Maybe it’s older, but not that old.” Um, no, to clarify, I said I *feel* like I live in one. Then he seemed to “understand,” but dismissed it altogether. Okay, complaint over!

    And Pami–this comment
    “I especially struggle with how much to share with other people. I don’t want people to dismiss my illness as no big deal by keeping it all to myself, but I also don’t want to come across as whiney.”
    expresses my thoughts and feelings perfectly. Do I have permission to borrow your phrase? I couldn’t have expressed it better! Spoonie hugs all around!