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, © butyoudontlooksick.com

©2019butyoudontlooksick.com
  • Kate The Great Pretender

    WOW…the words bove are basically what I have been saying for 5 1/2 years with paraneoplastic Cellerbellum degeneration…….You would know that I was sick if I had something growing out of my brain????? I just call myself and my BLOG…Kate, The GREAT PRETENDER!!!! so many similarties…….I just can’t put the above words together anymore……..I have had 2 lives BC (before Cane) and AC (after cane)….signed The Great Pretender
    <3

  • retromama

    I grew up with a mother who was too sick to socialize like the other moms. I watched how slowly her friends just stopped calling to invite her out. I listened to her tell the same stories over and over when people would ask, “where have you been” or “how are you feeling”. I took notice of their faces as they became overwhelmed and ashamed that they could not comprehend what she was trying to tell them. I learned from her that I had to hide my own pain, discomfort, and fatigue and to put on my disguise. Now I’m barely 30 and I can no longer hide it. It is impossible to stay coherent in the middle of conversations, to keep from doubling over in pain, or collapsing for no apparent reason. 
    I can feel my body dying and the doctors still cannot diagnose me. I suffer from a wide variety of symptoms and yet none can be quantified in a test. They tell me I have an amazing attitude towards life. They don’t understand there are only two ways to handle it, and when you’re done crying, smiling is all you have left. Laugh at the darkness, because after you’ve been through so much, nothing is scary. I know that all the days where I felt kinda normal are all in the past now. I focus on the simple pleasures now. A warm sun beam, a breeze that carries the smell of rain,  a favorite song, anything that can make me smile.  
    I laugh at the self-important people behind the desks who look at the pretty, skinny girl in front of them and say she’s not sick. One day, whether it’s old age, illness or injury, they will finally get a glimpse into my world. I hope on that day that they will be able to say, “I’ve loved and been well loved in return. I’ve lived a good life and made others smile. I know who I am and I don’t need your approval or sympathy.” I know I can.
    My mask is the person I want to be, not the body I’m trapped in.    

  • KC

    Whatever, I think that you love every second of this. In fact I’d be willing to bet that if there was a fairy who could wave a magic wand to make you perfectly healthy and make it so you had always been healthy you would refuse. Some people just love being sick. getting sympathy, feeling like a martyr, a saint, a voice for the voiceless. You love it. I mean just look at your facebook page, you do all these talks and traveling and you work full time, have kids and update this blog? Lots of people who aren’t sick don’t do that much. No one wants to come out and say Look, not everyone who is ill is some brave courageous person. Some of them are just as annoying (or more, in most cases) as they were before they were sick. Those whiny people get ill too. I just don’t get this huge pity party stuff. And God forbid ANYONE try to say ANYTHING that they think might HELP you. And btw, if enough people have mentioned your attitude when you tell them you’re sick for you to write about it then maybe, just maybe, you do indeed have an attitude problem. Because that is not the usual reaction of people when someone tells them that. And are you serious, that you hate people that “complain” when they simply state that they need a nap or have a headache or cramps? And these expressions should be BANNED? Because they don’t adequately describe what people feel (uh, to me saying I need a nap when someone needs a nap is describing it pretty damn accurately) and because of course, they trivialize YOUR pain, oh let’s never forget, any of us, ever YOUR PAIN. How dare someone mention how they feel within earshot of you (who they may not even know is sick, oh wait, something tells me anyone who has ever been within five feet of you for more than ten seconds knows how sick you are), you who has the worst pain of anyone who ever had pain. HOW DARE THEY?! How insensitive to you! I just don’t get at all this desperate need for everyone to “understand” you and what you’re going through. You know there are orphans in Africa who’ve had their entire families killed sometimes right in front of them, some who were also raped, who’ve known nothing of comfort or understanding or pleasure THEIR WHOLE LIVES. And yet I don’t see them online blogging about how EVERYONE MUST UNDERSTAND how they feel. (Well, that might have something to do with the whole being extremely poor thing, the lack of computers.) The point is, how much can anyone really understand another human? If I’ve never been raped, I can read about it all I want, talk to victims, but I still won’t know what it’s like. Same thing as suicide, or cancer, or a fire burning down your house or any other tragedy. All people can do is try to understand, but yes, OBVIOUSLY if it has not PERSONALLY HAPPENED to them they just might not COMPLETELY 100% “UNDERSTAND” it. I mean, isn’t that just common sense? Would you rather have everyone in the world contract lupus so they can UNDERSTAND? Well, of course not, because then what else would you have to talk about? Everyone has their OWN struggles, did you ever think that maybe the fact that they are going through some hard times of their own that that may be hindering them from complete understanding of your horrible pain and miserable life? Or maybe people are turned off by someone who begs for sympathy at every turn? It’s really unbecoming, to say the least. I mean who cares what people know or understand about you? Is this just a thing that’s come about by way of the internet? Because I am 30, not too old, but I remember a time when people didn’t have this overwhelming NEED for EVERYONE to understand exactly who they were, inside and out, and everything they were going through. It’s just not possible. No matter what you will always be misunderstood. It’s so futile, and you are always going to be unhappy until you realize that.

  • Catherine

    I know this sounds corny but I honestly didn’t know that other people felt exactly the same way I did. I couldn’t express it like this but just reading through the blog, I was so overwhelmed by the fact that it is exactly how I feel that I cried and cried and cried – and this is a good thing. I thought I was going mad and that I was the only person who hadn’t worked out how to be ‘both’ people and that everyone else with lupus had this bit sorted.

    I can’t thank you enough for putting this on your site. I stumbled across this tonight but I have read your spoon theory and that helped me explain to friends the things I never could. My trouble is that I haven’t told my colleagues or all my friends so getting the act right is so important which is very stressful but now it also means that I feel completely disconnected from people that I would otherwise, I think, be good friends with. I’ve had Lupus for 20 years, I’m 37 and handling the fact I have it, gets harder not easier.

    Thank you for sharing and enabling me to see that these feelings are experienced by others.

  • Alan W

    Wow! I wish I had read this a long time ago. It gave me some insight into my fiancee, who passed away on Thanksgiving day, 2012 after dealing with Pulmonary Hypertension for 7 years. Maybe not everything you said here applied to her, but enough did that I could see her reflected in this article and the things you said. Thank you.

  • Cathy

    Ruby2222

    Forget RM physicians. Now, it’s realized that neuro’s and internist are the best in getting diagnoses. Just keep in mind ….. You have to kiss a lot of frogs before you find your prince!

    Best wishes.

  • Debbie

    once again i am in tears. I have an awesome church. The people there genuinely love me and care for me. When they ask, how are you doing, they really want to know. But i often want to say nothing. I want to say nothing because, i don’t want to face how i feel. I am determined enough to make it to church, but that doesn’t mean i can do more. I hate that by the end of church i want to go home to bed because i am exhausted and i hurt. I have missed two precious baby showers because i just can’t do it. I have so many obligations that are have to’s, that i have run out of the ability to do want to’s. and i hate it . i don’t want my identity to be the sick one. the tired one, or the hurting one. I dont want to be on so many medications. I don’t want to fake it. Some days i go to work without make up on because it is a trade off. if i don’t bother with make up , i have the reserves to go to work and do work. But then again, when i get there, i also don’t want to talk about how i feel. As things get worse some days, its just too much. i don’t have a handicap parking space, but i qualify for it. but i don’t push it. until it becomes totally necessary, and some days, it is and those are the days i end up at home in bed. I hate it so much. Thank you for saying what i think so many days. Thank you for being real. i wish i had a friend here that was like me, so that they wouldn’t feel bad when i cancel at the last minute. so i wouldn’t feel bad too.

  • Laura Madison

    Christein, you are an awesome person and a kindered spirit! I smile a lot too. The more pain, the bigger the smile. Also, I have to stay cheerful for my disabled husband. If I don’t he gets upset with me. It seems like I can never let down without hurting anyone’s feelings. I have fibromyalgia, Epstein-Barr virus, peripheral neropathy, osteoarthritis, degenerative disc disease in my neck and lower spine. I’m sad that you have lupis. I hope you can have quiet times to rest and enjoy what makes you happy. For me, I enjoy nature, pets, positive reading, soothing music and feel good movies. Each day I thank God for my trials in life. I’m learning so much and feel very connected to people with invisable illnesses. This also includes my 17 year old daughter, who has fibro and chronic back pain – she understands, but doesn’t force a smile. God Bless you and everyone with invisable pain. <3 (:

  • This is soo awesome and soo well written. If i had a dollar for every person that told me im “fine” or to “suck it up” id be a billionare. This article is perfect. this just brings amazing awareness. I was diagnosed with fibromyalgia and chronic fatigue syndrome 2 years ago after my freshman season playing college basketball. I’m posting this to open it up to my Fordham university community and basketball community!! thanks so much!!

  • Buterflygirl

    Thank you so much for this site and your words. I have Chronic Fatigue Syndrome, Fibromyalgia, Postural Orthostatic Hypotension with Tachychardia (POTS), and Hypopituitarism. Your site has come to me at a particularly difficult and lonely time. I’m trying to remain hopeful and strong and your words and the comments of others speak to my struggle and my pain. It helps me feel less lonely and gives me hope. Thank you.

  • awesome

    AWESOME….

  • Dearest Christine. I have had your site on my blog forever and been a member but never read this. If you can, as I know your site is down, and this goes through, please read Beauty is Skin Deep & Hard Day’s Night on htt://ironiclee.blogspot.com. I feel like we are sisters. I also mentioned you on my latest post with a link back to your site. I do hope you are well.

  • Jules

    Wow, this made me cry. As I was reading it, I felt like I actually wrote it. Ever considered writing a book? The things you bolded and you covered pretty much every area, wow, don’t know what more to say. God Bless you and thank you for telling “our” story…amazing.

  • Valda Garner

    Hi!  You seem to be in about the same place I am.  I have been sick for 19 years.  It’s crazy how this illness has a rhythm, just like every decade of life has its own rhythm.  I don’t have the energy to keep up with the “normal” world so it is difficult to make new friends; I am new to the community I live in.  People here are friends by working on committees in their clubs.  So I find myself alone much of the time . . . and the doctor can’t figure out why I would feel depressed.  Comments like that make me feel as though I have picked a dim wit for a doctor!  Ha!  Anyway, getting out of bed every day and trying to act “normal” and go through my day being an outsider in the world can be tough . . . it gets lonely, doesn’t it?  I’m writing to you at 5 in the morning, because I couldn’t sleep.  Thanks for listening.  It’s amazing that you get what I am saying and I don’t even know you, but it feels good to “spill my guts”!  Thanks.

  • Spring Darlene

    The same goes for me, I often use the Spoon Theory to explain my pain to the one’s that I love but my pain has increased so much over the last 3 months that I am at the end of my rope and trying to explain how I feel , the words are once again said perfectly by you, Christine. The is the perfect way to describe how I have been feeling over the last 17 years that I have been suffering from Ankylosing Spondylitis, a debilitating type of arthritis where my whole spine will be fused together eventually but until then I suffer greatly each and every minute of my day. I started going to counseling again and I was trying to explain to him how I was feeling and I often describe my world as the ” Normal people ” are all holding hands in a circle and I am on the outside trying to gain my way in but I only ” look ” and “act ” normal when I am out in public but I can’t gain access to their circle because I am not ” Normal” like them but I am expected to be normal.
    I have been a fine actor for a very long time and now I can’t act my way out of it anymore and it scared me so, especially for my kids but I just can’t do it, I can’t I am done, done, done but life still goes on and I don’t want to miss anything but now I don ‘t care anymore and that thought scares me even more because once you don’t care, there is nothing left, and I have felt lonely and my pain has been my best friend for many years, only in the fact that it has always been there for me every waking hour. I used to be able to ” forget ” my pain for just a few hours when I first fell asleep but by 0200, it was back and then I toss and turn for the next 4 hours before pure exhaustion takes over and I sleep again for maybe 2 hours where I don’t feel my pain. The hours are getting less and the pain is more , I don’t get those blessed 4 hours of perceived life with no pain. I need those hours, that is what enables me to get up out of bed the next day but now without that relief , I find it harder and harder to get out of bed and be ” normal ” again for another day.

    Thanks Christine for putting my feelings into tangible words , it really helps me to see that someone else feels like I do and struggles with the same things that no one on this earth should have to deal with like we have to deal with it!!!

  • MichelleLB

    I can’t believe someone really wrote how I feel. I now what it feels like to be alone. My fiance tries his best to understand what I am going through but it’s hard. I feel sorry for him and my children. I have 3 kids and my youngest is autistic so it’s more important for me to “play” the part of everything is alright. I feel sorry for my kids because I can’t do everything the way I would like to. They try to tell me it’s ok that mommy cant go here or cant do this right now, but I know it’s hard for them. I have a couple of friends that also have lupus, so we are our own little “click” and know that if any of us need to talk or vent to go ahead. Whenever I feel too depressed about being “broken” (as I tell my fiance) then I come and read all the stories of how others are dealing with this and I thank my one friend for sending me to this site. thank you all for writting the articles and the responses for us to read

  • Nadine

    wow if I didnt know any better I would swear I wrote this one myself….I feel so terribly alone when I have a “sick day” (or week) I dont want anyone to know about it or feel sorry for me especially my children so it hurts more than the pain Lupus causes to have to pretend every single day that “Im fine” its so comforting to know that if I have a lonely day where I feel no one understands me that I can go online and read your articles….thank you for your words

  • ej pearcy

    C.G. Jung used an apt term to discuss the false identity we put out there a lot of the time: Persona, by which he refers to the name given to Greek theater masks, which were intentionally exaggerated at that.

    i strongly identified with your remark concerning the common dishonest question about how are you?  Your letter was a wonderfully honest answer to such a question to you!  i once shared with a great spiritual teacher of mine that i was so put off by the hypocrisy of that question, that i normally began telling them in no uncertain terms how i am doing!  A lot of it was/is disturbing, not all of it though, and that’s my truthful answer.  He frowned back at me and shared with me the anti social nature of my stimulus which conditioned the antisocial response i then received.

    That got me thinking more. Upon further consideration i’ve found ways to be even more truthful AND considerably more friendly.  i have reenvisioned my problems as challeges.  i have reenvisioned my challenges as having precipitated from unconscious needs regarding the unfolding of my soul.  i have remembered how not getting what or who i wanted later became understood as the pathway to a great gift of healing change. i recalled how all the efforts i had made to gain acceptance by the social ideals we are handed seemed ill spent uses of the energy, time, gifts, and love quotient i had at my disposal.

    i remembered the true tales of some many popular, greatly endowed, multifariously talented, beautiful people, who personally experienced the extremely transitory nature of such greatly sought after goals. They experienced a fall, a great public sin, a sea change in some big opinions, bankruptcy, ill health, even retirement and old age; and suddenly they were of no more account in the books of popular opinion that the homeless beggar on the nearest street corner.  It seems to me that the revolutionary change in their status had to do with the fact that they no longer had those false gifts at hand for others to rub up against and bask in the glory of. Too bad!

    Another thing my very challenged life has brought to me is the self affirming truth that i am one among many who are living lives of challenge far beyond the pale of what we have been consciously wishing for.  It is nothing short of amazing to learn that there may not even be anyone who has the kind of mostly blessed life that we have wished for, expected, and felt short changed for not having been given. Once, long decades ago, i was virtually whining to a graduate school adviser of mine about the problems i had related to a crippled left leg i’d gotten from being run over by a car in the peak of my youthful manhood.  He seemed angry by my self pity; and practically ripped off his expensive looking monogrammed white shirt and tie outfit to show me a wide scar that ran from his navel to his collar bone, which, he explained animatedly, was a partial result of having had to receive a mechanical heart implant in place of his natural heart!

    In one of the jobs i am glad i had long ago; i was inspecting facilities in Ohio for the population of profoundly retarded citizens.  There in long rows only a few feet apart were adult human beings who were often curled up in fetal positions, often screaming, typically in pain. lying often strapped down sometimes in their own vomit and feces, AS THEY HAD BEEN AND LIKELY WOULD BE FOR THEIR ENTIRE LIVES.

    Those are two of the experiences that punched out my ability to feel sorry for myself.

    Add to that the heroes i have read about, heard about, or even met, who are living exemplary lives of giving, receiving, and joie de vivre; and i have had a wonderful life living experience that challenges my challenges.

    You are such a hero and i hope you and those in your environments will never forget it. 

    Thank You for Your Sharing

     

  • Rose

    I went through that for 7 years Rubi before I was finally diagnosed with fibro. I went to the doctor about every 2 weeks for blood drawings and at one point was seeing 2 drs at once getting blood drawn every week. Unfortunately though, they would not give me pain pills and kept trying “experimental” things on me that either didn’t work or made me extremely sick.

  • Rose

    This was amazing and thank you so much for writing it. I’m 23 years old and I have almost debilitating fibro. I feel exactly like you all the time. I constantly tell my husband I’m probably a better actress then the ones on tv. Because at any moment (for a while) I can make people think I’m completely normal. This article described everything I feel on so many days. Thank you again.

  • oriablue

    This is absolutely beautiful, raw, utterly open- I can relate to every word- now what about the blotchy crying jags from reading your great words, and then the CSF fluid plugging up the nose- oh to be able to fully cry- thank you so very much- your writing and the soul with which you express your being is an absolute treasure.

  • I am in tears..

  • guest

    You are indeed extremely lucky to have the dedicated support of such a devoted partner….Statistically, it’s truly rare, as most get frustrated, feel the ‘partnership’ is unfair, that they have to do more, yet have to make do with less….

  • Anon

    Thank you, thank you, thank you for articulating so well what I have so much trouble expressing

  • Fakinitfilmmaker

    Yes, those of us who are lucky enough to have a loving supportive spouse, partner, friend and/or family member are so blessed. I couldn’t do it without my very understanding, if maybe a teensy bit overly protective ;), adorable husband. my 3-year-old and myself are quite a handful when Mommy’s down for the count for a few days. thank you to all of the supporters, encourages, caretakers and just naturally compassionate people out there.

  • Barmor13

    Manonm-
    Are you saying that they asked you take a medical leave b/c they DO know you’re sick? Have they given any evidence of decreased performance on your part? Or…

    Are you saying that they DON’T know you’re sick and asked you to get checked out. And again, based on what criteria. If you want to hold on to your job and YOU feel that you are well enough to do so, short of a proven loss of productivity or some other decrease in output on your part, how can they legally do what you are saying?

    I know we don’t know each other, but I have lupus and have to lie about constantly and forever if I want to continue to work. I work in the film industry and being femAle is bad enough, but being sick is a non-starter. for the people

  • Rubi1222

    I definitely can relate with the author, but our only difference is, she knows what she has when I dont know what was wrong with me. Its nearly 4 years now that i experiencing undescribable pain, have seen 4 different rheumatologists, apart from being seen by my gp aswell. With all the series of blood tests I had, I could have already donated packs of blood to society. But still, doctors cant tell me what was wrong. I have never known anyone who have taken painkillers this long.

  • I have MS and can really relate to this. I never “look” sick, even when I fall I just look drunk or clumsy. Actually had a sister in law who believed I was making up dropping so many things.  Sorry my hands don’t work…take it up with my latest doctor! I once broke one of her glasses and said “sorry it is an MS day”.  I got back “it’s ALWAYS an MS day for you”.  Interestingly enough, she hit the nail on the head. Wish she could have heard herself.   

  • Kmsussman

    “HATE” to break this news to you-but this is a very mild word she used to describe her horrific experiences-if this offends YOU soo much-then go find another site that shares your “angelic” POV towards pain….The real world just like pain isn’t all sunshine & rainbows-it can be hateful,mean,etc….I read all the posts about what she wrote & YOU are the only ONE WHO HAS A PROBLEM with it-find another site because this courageous woman speaks out for her fellow pain sufferers-Something for YOU to think about??? If  I seem harsh so be it-having a bad pain flare-up,sleepless week w/family drama added on top of it-just another week of a chronic back pain,major depression,fibro 44 y/o woman:)

  • Ruairaidh

    The frequency of the usage of the word “hate” caused me to stop relating to your experience. 🙁

  • Kmsussman

    Thank you,thank you for putting my feelings & life so eloquently in words. Thank you also to the rest of you for sharing your daily life w/me. I don’t have lupus but have the same daily problems as all of you & I finally reached the point where if I can get out in the “real world” that if I get the glares,stupid comments,etc..I just blow them off but every once in a while it does get to me-it means we’re human

  • jessica

    Literally in tears, I’m 30 yrs old mother of 4 girls 13,12,5 and 4 as well as a fulltime caregiver for two strong women as yourself also with autoimmune disease for the last 5 in half years I have been going through hell I thought,  I suffer from pain of both wrist (carpul tunel) anemia, ankle, foot, muscle spasms, the loss of 2 pregnancies, hair loss, it got so bad I started passing out while I was driving I had no idea why I was 24 at the time I went to my doctor in tears she sent me home with antidepressants and told me I was to young to have all these issues I was just depressed try walking she said for the almost 70 lbs I gained after my pregnancy I didn’t even have the energy to argue with her but my husband was so upset I wanted to give up I just had a baby and I could not care for her not until I had a WIC appointment and they did an iron draw my iron levels were so low he didn’t how I made it there my husband took me to the hospital anemia after blood work hypothyroidism I took the pills everyday feeling a tad better but always in pain weak and confused and it was getting worse every year not until 4 months ago two carpal tunnel surgeries later and the time I lost playing with my girls because I could not function fearing I would lose my husband because I got so fat my hair was falling out I would get so upset overwhelmed I could not control my moods trying to deal with the pain stress I was refered to a rheumatologist and God bless he heard me out he ran so many test he was right on autoimmune thyroiditis  (Hashimoto’s Thyroiditis)  the hypothyroidism was just the condition inflammatory arthritis vitamin d deficientcy life for me will never be the same I thought my life was over but it’s not it’s harder but I’m learning to have peace with it living day by day I have so much more compassion to those who suffer from illness physical or mental because I know how it feels it’s so great of you to share your story thanks 

  • Spoiledbeth

    I don’t have Lupus, but I feel very much the same way… I have trigeminal neuralgia, along with a host of other issues, and I have good days and I have bad days… I don’t do “a foot in both worlds” anymore… I don’t do much acting for the sake of others, unless it’s for my niece and nephew, because they are still young enough to have fun with me, even if it’s a mellower fun than it would have been before I got sick… on bad days, when they are around, I pull my big girl pants up and force myself to get up and play with them, because they are usually pretty happy if I just sit on the floor and play Barbies or cars with them.  My pain sets my whole day.. it wakes me up when it’s time for my morning meds, and always on time too!  Who needs an alarm clock?  It also always reminds me if I’m even a few minutes late on my evening meds, because the face pain kicks into overdrive and I want to rip my face off, my face going into spasms.  I’ve had people ask me how I can live with the pain… I just simply tell them one day at a time.  Oh, and when they ask me the stupid question of how I am, and I know they don’t really want details, I just tell them I’m surviving… it gets my point across, and gets them to stop asking if they don’t really want to know.  If they are really interested, and really care, they will ask more, which I have to admit doesn’t happen often!

  • Nickandtrudi

    You are amazing ! Just like everyone else said, you just put my messed up life into words! Thank you ! I don’t even know what to say other than WOW ! Right from the heart is where your words came from and I appreciate it so much. Words that I wish I could say and have others actually say “I get it now”. You can only act for so long then you’re like scew it, this is me, take it or leave it. Most will leave it because the are selfish and refuse to try to understand. We, the ones with a chronic illness, are drug seekers, lazy, and weak in the eyes of others. I will give you one day, just one living my life and tell me that I’m any of the above. Even the closest person, the one that loves you the most can’t fathom what every minute of your day consists of. You hit the nail on the head when you said you literally have to prepare your every move for the day the moment you wake up. You can’t miss one thing or the entire day is hell, more so than it already is. I get a lot of crap for always running behind, which I hate more than they do. I can get up at 4 am and still be running late so why do it. I stay in bed until I absolutely have to get up because I know what’s in store for me…every day of my life ! The joy of living is no longer there, why would it be ? I have 4 kids, 2-18, they certainly don’t understand and I guess I wouldn’t either. Other moms can do it, why can’t you ? I WISH I COULD, trust me. My body doesn’t allow it and my head can’t handle it. Meds anyone ? I work, on my feet all day, at a busy physician’s ofc, then off to ball games, practices, dress shopping, or whatever else is required to be considered a good mother. Sometimes I have to say no to people that depend on me, that’s as painful as what I live with every day. I wish there was a manual on how to be a good mom and wife while living with FM. I don’t see hiw they can go together but they have to some how, right ? Well, I managed to turn this into a venting session instead of staying on task and giving kudo’s to you for such a brilliant, well written story of our lives..sorry. Thank you again. Your story is truly appreciated and really means alot. Thank you for speaking for all of us, not matter what our illness is

  • Emmykins132000

    I feel exactly the same way. Everyday is a double edged sword, the private life vs the public life. Thank you for having this site, it has been very helpful for me to know others are in similar situations as myself. For me it Fibro, Adrenal Insufficency and nerve damage in my low back. Keep spreading your story and you will keep helping others just like us.

  • Tesv97

    This explains me. Even my homebound teacher thinks I’m perfectly fine. I put on a smile just so I don’t have to explain what I’m going through. After a while I feel like people stop believing you because there is no way someone could be so sick. It helps
    to know I’m not the only one who has to put on a fake smile everyday

  • Micshells

     I got accosted by someone just last week.. who decided to let me know that karma would get me for using a handicap parking place when I didn’t really need it and one day Karma would make me really truely need that spot, I looked at him and said “oh goody, that means I get to live that long!!”

  • Micshell Self

    Wow, thanks for  putting every thought, feeling and emotion of my life down in writing, I wish I could think clearly enough right now to write a whitty response but the tears falling down my face are blurring my reality right now.  It seems that nobody ever “gets”  what my life is like, not my Spouse, who Lord knows, he tries to and definitely not my family, so when I read something like this or like the spoons article, my heart just breaks to know that people do understand me but then it breaks even more to know that other people are experiencing the same hell that I am going through.  ty again for the understanding and courage to put our private hell into words.   Scleroderma, Fibromylgia and Polyarthritis (long list of other things lol) are my hell on earth.   <3 Mic

  • Michelle

    Thank you for writing this!!! Crying big time! I too can relate. Susan..I also get stare downs when I park in the Handicap parking. My kids will even ask “Mom why do people give u dirty looks when u park?”…I just laugh it off with them. I hope thru my example..my children will grow up to be understanding of others..and a ripple effect will go from there. Thanks for all the stories! Glad to know..I am not alone! 🙂

  • JOANABF

    LOST IN TEARS…! THANK YOU!

  • Jeanne Rhode

    Amen and Alleluia!

  • Susan

    I really appreciated reading the article and the comments below. They are all inspiring to me. I have to share my best one with the handicap parking though. I was in K-Mart parking lot and parked in the handicap. When I got out and started walking to the door this lady came at me screaming that I was parked in the handicap and that I should consider there are those who really need that space. I was patient and looked at her as she caught up with me and said yes, I am aware of that. I too am handicap, though you cannot see mine. She called me a (bad word) liar and to show proof to her. I did. I pulled out the license for my handicap sign. She read it and looked at me and said “you don’t look it” what exactly do you have? I asked her if she was a police officer or a guard over the parking lot. She said no. I said then it shouldn’t matter to you what my problem is. The fact that I have a sign should be sufficient to you. I am so sorry you feel compelled to make me feel insignificant today. I hope you have a wonderful day, now if you will excuse me, I need to get the one thing I came for so I can get back home while I can.
    She was astounded. At that time a guard from inside the store came out and asked if there was a problem. I said no. She said I was parked in a handicap and had stolen someones sign. I showed my proof and he looked at her and said madam, I suggest you mind your business. This is legal and binding proof that she can park in a handicap and you should really control yourself. It is not your business to decide who can and who cannot park there. Good day. And walked me into the store. I thanked him, he asked if I wanted to file harassement charges. I said heavens no. She just needed attention today I guess.
    I went on my way, got what I need and went back home. Some people just do not understand the “you don’t look sick” fact.
    Everyone, have a great day!

  • Just what I needed today, someone who understands what it’s like to live between the healthy world and the sick world. I too know the burden, I have an undiagnosed disease (maybe lupus, may Factor V Liepid, who knows) and on my ‘good’ days can act my way through it with the best of them. On a ‘bad’ day it’s a struggle to even open my eyes, only one person sees that side of me because he’s loving enough to understand and care for me when I can’t.
    Thank you so much for writing down exactly what it’s like. If people ever question my life again I’ll have to point them over here so they can get a glimpse of what it is actually like.
    Thanks,
    Bobby

  • pregnantbuddha

    I want to make a t-shirt that says, “But You Don’t Look Sick!”  Not so much to draw attention to myself or garner sympathy or, by any means, to be obnoxious, but to perhaps make people think a little more about invisible illnesses.  There is so much ignorance out there about what it means to be chronically ill, especially the fact that the ill one doesn’t necessarily show obvious symptoms. 

    I walk with a cane, at times wear a variety of braces, and park in Handicapped even though I know many eyes may be watching and many minds may be thinking – What is She doing in a Handicapped space?  But (in general) I don’t think twice about it – these things help me do what I need to do and have become simply a normal part of my lifestyle.  I’ve been coping for so many years with my illnesses that I mostly forget about what others may be thinking about me.  I don’t owe anyone explanations about why I do what I do or how I do it.  It is very painful, however, to know that my invisible illnesses give others an excuse to judge me, make assumptions about me, decide who I am before they even meet me.

    But I also only go out when I feel I can handle the challenge of being out in the real world, where anything can happen, and often does.  I try not to have expectations about how my outing will go – it’s always possible that I won’t even make it out of the house let alone the driveway and into town.  Disappointment can devastate me so I try very hard to not expect anything and to accept whatever comes my way.

    I rarely leave the house, but I don’t think folks notice that.  They only notice that when I’m out in public, getting things done, acting upbeat (when able), talking, laughing – that I don’t appear ill at all.  I’m not sure it crosses their minds that when I get home I am alone and left to take care of myself, my home, my chores by myself.  I am sure they don’t realize that I’m lucky to even make it home in one piece, that I may arrive home in tears from pain or the shear emotional toll it takes to accomplish my tasks, or that yes, I made it home, but I may not be able to unload the car or carry things beyond the inside of my front door or that I may have to go to bed for the rest of the day and possibly the day or days after that.  I’m not sure they consider that I really need help to get through each day and that I don’t have any.  Yes, it’s easier for others to not think about such things.  But I don’t blame them – I don’t want to judge them for how they cope.

    And the older I get the more I realize that I’m not the only one out there suffering.  Everyone suffers to whatever extent, everyone hides something when they walk out the door, everyone keeps secrets about their lives.  When I talk to folks I am often amazed to learn what others are also coping with; it’s not just me.  Thousands of us have invisible illnesses or know other people who do.  It’s when we share with others parts of our lives that they can’t see that we realize just how much we may have in common.

    But I still want a t-shirt that says, “But You Don’t Look Sick!”, because there are thousands who also feel very comfortable with their judgments and assumptions and their amazing capacity for ignorance.  Those are the people I’d like to challenge, if only a little bit, to think before they jump to their conclusions.

    Thanks.
    Kate

  • hubby

    I am just fine as long as we are together. Don’t apologize to me, I just want you to feel beter. I love you.

  • Manonm

    Hi Christine, thank you so much for sharing your story, it is just like readu=ing my own…I am 32 years old, a mother of 2 young children
    and living with cancer for the past four years. I hated the look on people’s
    face when I told them; I hated the phone calls, the pity looks, the flowers the
    cards… I wanted to be healthy not sick. I thought that if I let myself believe
    I was sick then I would not make it. I chose to act just like you and I still
    am. I use tanning creams; I dye my hair, cut it short… I choose the people I
    tell how I feel and I only go places when I feel up for it. It works for me; at
    least it has for the past 4 years. But recently my workplace has asked me to go
    for a medical. They said they couldn’t hold on to my job indefinitely. I don’t
    know if I feel sad, mad or just think it’s my fault for not telling people how
    I really feel. Cancer is so much part of my daily life; I don’t want it to take
    over. Hiding it is my way of coping. I try so hard to LIVE that I don’t want to
    talk about anything that would remind me that I am on reprieve. Why should I be
    penalized for trying to get my life back? For enjoying myself when I feel good?
    I have lost so much already… I just don’t know how to handle the idea of
    loosing my job just yet. I have lost so much already. I understand they need to
    move on, but I wish they would just leave me alone. Cancer is not flu. It is so
    hard, it takes so much from you, physically emotionally and yet you can’t
    complain because you survived. I am thankful, I wake everyday thinking how
    lucky I am, I have 2 adorable children, a loving husband and great friends and
    family. I am a positive person and I try hard to concentrate on what I have, on
    what I can do rather than what I can’t do. I think that’s why I act healthy and
    hide at home when I’m not. I feel I have won a little battle each time I
    accomplish something, and I don’t think I should hide it then… I wish I had a
    friend who was as sick as me to laugh about it sometimes, but I don’t. I don’t
    feel sick but I am…

  • disnag01

    I love it… “But You Don’t Look Sick” should be fibro’s new slogan.  Well said Christine!  And as many others have commented… your article describes my life as well.

    I like to show the healthy girl when I want to be included in life.  I like for people to know when I have nothing left to give so they stop expecting things from me and I can give myself a break.  I often feel like I should walk my dogs at night since neighbors see me in daylight and say- how could she walk or run her dogs, she must be a hypochondriac.  Little do they know how badly it hurts to try to have some normalcy back and how little that activity is compared to what the healthy me was capable of doing. And then they won’t see me for days because that snapshot of health did me in.

    I recently got my closest friend back in my life when she realized how sick she was and began to see that it “takes one to know one”. She saw that I was very patient and understanding when she needed to cancel our plans or be more spontaneous when a burst of energy was available.  Its great to have a friend who understands life with pain.  We laugh to say that our two brains make a whole brain. A fun get-together is kicking back on the couch (with heating pads or ice packs) and watch a movie or show before the school bus arrives with the chaos of the wonderful yet noisy kids. Now we just need to remember to call each other 🙂

    It would also be great to have energy and a cute outfit to wear (that will fit any day, regardless of the time of day) oh yeah- the shoes… sorry hubby, can we just order some dinner to be delivered and watch a movie? Sorry so lame.  I’ll play scrabble 😉

  • Gomes4medic

    I only wish I was able to speak, explain and write so eloquently. Each and Every word fits me, with my daily fight.
    You’re an inspiration to me. I strive to become tithe speaker you are and unfortunately, I am Just like you about the pain behind the smile. They all say “You don’t look sick….”. Thank you for this article, I will share this about “us”. You’ve said it so perfectly to fit “us”.
    Have a beautiful day. Xo

  • Igarfy

    Wonderful and very brave…..Hugs

  • Christine — this was so well written, and I really identify with it.  Thank you.