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, ©

  • LouiseMercier

    Mau cuan setiap hari? Yuk gabung di auto menang anti rungkad!

  • ShirleyB.Scott

    Some illness are really tough to bear where as some are different like this chronic illness is one of the toughest one to bear..

  • Ellen Ribolla

    I’ve just discovered your website, Christine. The latest input looks like from a year ago, but it doesn’t matter. Having chronic pain/ illness hasn’t changed. I suffer with chronic migraine and spinal osteo-arthritis. Your article, ‘Pay No Attention To The Girl Behind The Smile’ really hit home for me. Thank you.

  • LammyLove

    As many of my fellow autoimmune friends have said…the days I am the most made up and have the nicest outfit on…the worse I am. Thank you for writing an article from the patient point of you. I remind myself people intend to mean well, but I may lose it if one more person asks me….”Why can’t they just fix this”? If only it was that easy.

  • Angela Torres

    Relationship expantations. They understand. But, you alway in up explaining again. Why you can’t go. But, they get it. Except lets make her feel guilty for saying no. I can’t put myself first? Also, I have 3 young men on the autistic spectrum. I’m tired of it.

  • Kate

    Thank you Christine. Lately I’ve been experiencing a PsA flare along with raging anxiety and depression and having an especially hard time hiding it all this time around. Your words “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.” really spoke to me today as i have been trying to navigate this and contemplating letting down all guards to all of my friends and family. I have been having a hard time articulating why I do what I do but you’ve put it beautifully here. I think I may just share your words instead because I don’t think I cold put it any better myself. Thank you Christine. Your site is always a great source of comfort when I’m feeling alone in my struggles.

  • Sylvia Evelyn

    I relate to what you say, Natalie. I’ve also moved to the outskirts of a new city and find it exhausting to make new friends. I’m often cancelling last minute, the last time I cancelled my plane flight to go with my daughter somewhere marvellous, I know she was upset to fly alone, she kissed me goodbye and said: “Tomorrow you’ll be flagellating yourself for not having come with me”. I don’t think I’ll ever forget those words. ¿How can I punish myself the day after having felt nausea, vomiting, bad headache, barely being able to walk, etc.? ¿How does one get on a plane like that? Maybe on a stretcher…? In the end I was not too sad about not going, I relaxed and did some things I’d been putting off, I didn’t feel pressured every day. Thank you, and of course Cristine for writing all this. Hugs.

  • Beth

    What an amazing description! It’s like you know my soul and wrote about me. I too put on my smile and play the role of a normal person. Rarely do I give an honest answer when asked how I’m doing. “Fine” is the standard answer. In my head I’m thinking… Wretched, miserable, exhausted, numb or sometimes angry or depressed. A long way from fine. But as you said, do they really want to know. They think I’m faking anyway… They don’t want the real answer. I especially related to your comment about people complaining about headaches or the common cold. Chronic illness is taking away my empathy for these folks that suffer from acute illness. I just want to say something like “you think you’re feeling bad? Step into my shoes for a week and then tell me what bad is”. I feel like a horrible person but come on! You have a headache? I have such severe back pain that it feels like a kidney stone I had once, except it’s not going away. I have a migraine, syncope, and am so physically exhausted that it takes hours just to recover from a shower. I also suffer from chronic depression and anxiety. I’ve been on a ventilator twice for respiratory failure. So take your headache and a couple Advil and shove them up your arse. Please and thank you. Also like you, I’m getting too tired to play the man behind the curtain. I don’t have the energy to play act the person I want to be. I’m so apathetic that I just don’t care anymore. I’m becoming a bitter bitch. I’m not the person I used to be. And after 10+ years I don’t even know how to find her.

    Virtually every word you said rang true on my heart and soul. I am so glad I found this and the comments below. Thank you all for sharing. It’s so heartbreaking that the lot of us (in addition to millions of others) have to live like this. It is helpful to know that there are others out there on this same unfortunate journey. I love the idea from below- asking your friends to read this. It really was so specific and beautifully written that it might just help the healthy understand the sick. It’s hard to put into words so now I have yours 🙂

  • Natalie McCain

    This perfectly describes how I feel most of the time. Everyone says I’m a great actor or they don’t even know I’m acting. I recently moved to a new city and I just do not have the energy to make new friends. It is so hard to keep the act up and people just don’t understand when I cancel last minute. I want nothing more than to be normal and plan to hang out but I just can’t count on my body. It’s really nice to read that I am not alone. I have felt alone in this for far too long. Thank you for writing this.

  • Kathryn

    Thanks for sharing! I am having autoimmune disease symptoms and strong, inspirational people like you give me courage to face my future 🙂

  • amyk

    while my illness is mental rather than physical, i too have always been ‘the girl behind the smile.’ i make people laugh, people want to be my friend, but then i back off. how can i allow someone to enter my life, knowing that they will eventually see the Real me- depressed, anxious, scared to death of life, even though i also love it? you describe this double-life so beautifully. i love your writing. keep up the great work, and please know that This person, for one, Really likes the girl behind the smile- You!

  • Henry Nancy

    I want to thank Dr. Olokum to bring joy and happiness to my relationship and my family. I lost my boyfriend, and I needed help until I met with Dr. Olokum the true sorcerer, and he assured me that I will have my boyfriend back in two days after the spell has been cast. two days later, my phone rang, and surprisingly so was my boyfriend, who has not called me for a long time, and made an apology for heart break, and he said that he is willing to devote the rest of his life with me . princetess wave released him to know how much he loved me and wanted him right now .. me and my boyfriend is living a happy life and our love is stronger than the way they were even before our break up .. All thanks to DR Olokum by excessive work he has done for me. Below is the email in the situation that is being subjected to a heart break, and I assure you that as mine has done for me, it will definitely help too. Email: [email protected]

  • Fluffypinkmonster

    Thankyou for writing this. For a long time I have felt like this but have been unable to get the words down for fear of breaking in two. I have asked my friends to read this now before they ask again how I’m doing as I hope it will change the tone in some of their voices or the look on some faces . If not they can leave and not come back . Thankyou so much for putting words to my life. Xxx

  • antique2rose

    Hi Christine. It is good to meet you. My name is Shelley or you can call me antique2rose.
    I understand many of the things that you are talking about. I was diagnosed 2 years ago with a rare Immune deficiency.(not aides or hiv) My body does not make antibodies and I do weekly infusions of other peoples donated antibodies. It took over 20 years to get a diagnosis. Like Lupus, immune deficiencies effect other parts of the body as well. Yes, I get the questions and the stares, especially if I am having a “setback” or wearing a medical mask in public places.
    I am so glad to hear that you are letting the real “you” be seen and heard. I think that it is great! There has never been and will never be another “you”. There is only one of you and that is worth celebrating!
    Be kind to yourself, Christine, and let me know if you want to pursue this conversation.
    Sincerely, Shelley

  • christine

    My name is Christine, I have lupus in addition to a few other autoimmune disorders. This post has me in tears, as if it is me writing this. It’s only been about 5 months since my first autoimmune diagnosis, 3 since lupus. My therapist lead me to your site. Thank you for your truth, honesty, and strength. This post is me to a tee, and however much it sucks, there is comfort in knowing i’m not the only one feeling these things. Thank you for sharing your story!

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  • EbbyRN

    I feel you Ann..endo was my first in several pain causing diagnoses…I’d say endo pain is a totally differebt beast from PMS and just cramps!

  • Nicole31

    This article was amazing. I was recently diagnosed with lupus and of course I’m going through the woes of trying to figure out what else is going on with my body. My biggest pet peeve has been hearing others complain about simple pains. Then, I feel guilty for having that as a pet peeve because I think to myself they may really be hurting, but I just feel like their pain will go away most of the time with tylenol or ibuprofen for me it takes something prescription. Yet another prescription I’m having to take among the others and sometimes it still doesn’t help. I just really enjoyed reading this and feeling like someone understood. I love the honesty of it!

  • Ann

    Yes. As somebody who lives with three invisible chronic illnesses, I nodded again and again as I read this–over the shared feelings about illness and how others react, the understanding I feel about having knowledge I wish I didn’t, and the “Oh!” [with pointed look] when others first learn of my illnesses and pain. However, as somebody who suffers from endometriosis and premenstrual dysphoric disorder, I was stopped cold by your comment about those who complain of “PMS cramps.” For the 1 in 10 women who suffer from endo know, PMS and cramps can be debilitating. They stop our lives in its tracks. And there is no cure, only band-aids and bad treatments. Please, let us be included as those who can understand your powerful blog post, rather than marginalizing us in the same way our doctors, families, and friends do: by insisting that PMS and menstrual pain are only in our heads.

  • KazeChama

    The last paragraph is so wonderful. It describes very well, how I feel about many people in my life.

  • Oh how i can relate to this

  • tracey

    This is awesome hits every factor of our lives thank you so much

  • Lorraine

    Thanks for the article. I can relate to all of it but one part where you say you want people to love you because you are a great person. I strongly agree with that. My illness as you know has it’s ups and downs. Well last year I had lost so much weight I was at 117lb, which was not good for my body frame. I was underweight, my doctors (GI and Rhumatologist) worked hard to make me gain my weight back, and nothing was working, I couldn’t keep ANYTHING down. I would see myself in the mirror, all I could see were bones, I had no color, my eyes were sunk in. I looked like I should of been in a horror film.
    Well, I didn’t leave my house much, but when I had to, I would go to the store, and I would see people, people who knew me before I had got sick, people who knew the real me. I mean even after I was diagnosed, they knew what I had. Well, I remember walking into the store and people staring at me, I felt uncomfortable but i didn’t let it get to me. All I could do was hide my pain thru a smile. So I’m walking around the store, and I see “friends” (or so I thought) that went up to me and gave me a hug. As they hugged me, they started to cry, saying, I’m sorry, I feel bad, look at you, you look sick. And in my mind, all I kept thinking was, wait, look at me, look at the person I am, look at the person, I was before I had Lupus, I’m still the same person, I’m still the same, loving funny person you know. I’m still in here. And as time went by, I noticed that people were hugging and talking to Lorraine with the illness, not the real me. I did get upset. I wanted people to talk to me, not the disease. I was still the same, I mean, I know there was damage going on, but it was still me.
    The reason I say that also is because I had a friend who passed away from breast cancer, but when she was alive, people would do the same thing, hugs and kisses because she was sick. I would go up to her and I was seeing her for who she was, not what she had. And it made her feel comfortable. And that’s all people with illness want, is to be treated for who they are, not feel sorry for them for what they have. I apologize for writing a novel here, but seriously people need to understand, we’re still the same people. We have to change our life style, we don’t change who we are. We accept what we have, and so should you. I accept all the love, hugs, kisses that people wanna give me, but don’t cry over me like I’m already dead, or feel sorry for me for what I have. Just accept me for who I am, I’m still here, the same person you’ve known for years.

  • jackie

    This is so true, I cried. Thanks for putting it in to words. You are very special to be able to do this.

  • Anon

    I really appreciated reading this. Thank you! I have been dealing with an invisible illness for years, and have only finally started getting answers in the last year. Thankfully I believe I can be cured, and now getting the right bloodwork has revealed what I need to start getting better. But it’s been a long, hard road.

    People who remember me as healthy think I’ve just become lazy and unorganized. They don’t understand that there’s a medical reason for why I have less energy now. I’ve frequently been told that I don’t look sick enough. One coworker even told me that because my illness isn’t easily recognized, I should just suck it up and get used to not being believed. That hurt a lot. Now some coworkers won’t even look me in the eye because they think I’m a loser – people I’ve worked with for many, many years. It’s demeaning and dehumanizing to be treated this way, not to mention depressing. My doctor has been great (although I went through a lot of not-so-great ones to find her), and she is researching all the time and suggesting new approaches. I tried to be strong and downplay my illness for years, but now I’m in a situation where even talking about it makes me break down and cry.

    Probably the worst thing is that my boss deliberately overloaded me with work this year so I could “prove” that I could still do it and gain back the respect of my coworkers. She did it with good intentions, and being a very energetic person it made sense to her, but it backfired badly. I’m looking for a new job right now, because I know I deserve something better. I’m still very capable of working in the right position, and have lots of qualifications and experience, but deliberate stress and unsupportive coworkers and not welcome in my life anymore.

  • Diana Booth

    Thank you for putting things into words that my brain just isn’t capable of doing! ! This quote is very helpful because it’s hard to even get my husband of 5+ years to understand this ♥ “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 thongs 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.”♥
    – See more at:
    Diana B.

  • JennyBear

    Thank you, Christine! I’ve been coping with chronic illness for 15 years (in my case, MS) and I have many, if not most of, the same sentiments, and similar difficulty trying to explain my reality to the healthy folks around me. Seeing someone else articulate it so concisely is incredibly heartening. I appreciate your words immensely. Here’s hoping you wake up tomorrow with lots of spoons!

  • SuziArt23

    Why can’t we just be who we are? I am sorry but I read your article and all I saw was your ego being too proud to own your illness in public. How will we ever convince OTHERS of our illness when WE pretend not to have it!?! Personally, I use my CFS to educate and celebrate. If the people around me know what a struggle I go through just to BE THERE, they see real strength, not the lie that ‘everything is ok’. That way I can save my energy for the truly important things – and makeup is not one of them in my book. I don’t mean to offend anyone but I guess I just have a different take on this issue.

  • A Boring Passersby

    sorry if it’d offended you~ great article Ms.C

  • A Boring Passersby

    all i have to say is: …and that’s why being an under 13 puts me in a good position because if everything’s as you said then I’d rather die than putting on makeups and act like a girly git in the grown ups’ society.

  • Gena

    Your article touched me very much. I have been very ill the last two years, losing my job in the process. My life basically came to a halt, i lost my driving privileges. I have had several tests It could be so many things because of the symptoms but the tests all come back neg I try to put on a brave front but I am getting so tired my friend! I have had some progress but then again it seems we slide back and the pills!!! So I understand you and pray for you Miss Christine!

  • Donna

    I am a friend of Glendas. She sent me your letter. I also suffer Hemiplegic migraines, have gone through cancer several times, and a sudden cardiac death. I have spent my time in wheelchairs. I have been disabled since 2005. Your words hit the nail on the head. Thank-you! I am woman behind a smile. Best wishes to you. Donna

  • Glenda Eakle

    Christine, My name is Glenda Eakle. I just read this and wrote the comment below. I was going to share this article with my support group and then saw that maybe I would be infringing on your copyrights? I’m not sure if that applies only to the “Spoon Theory?” I will not share it if it’s not allright with you. Please let me know through my email. Thank you so much.

  • Glenda Eakle

    I don’t have Lupus like you. I have Hemiplegic Migraine Disease. It is amazing to me how you put into words exactly how I feel. Made me cry. Wish I could express myself like you do and just let it all out. Thank you from all with chronic illnesses for this. I am going to share it with my support group. Take care and hugs to you.

  • Rich

    So beautifully written, hits the nail on the head. I feel that this is how most chronic pain people / people with invisible disabilities feel. When I’m in a ‘flair’ (which is usually every day) all I want to do is hide in bed so no one can see the tears. Rich, from the wonderful world of RSD. 6yrs. & counting.

  • Thank you for this website! Thank you for being honest!

  • Melissa

    amen! perfectly said . when im really sick it helps a lot to read your posts i love them 🙂 it reminds me im not alone .thank you so much!

  • jenn

    If I didn’t know any better, I would have thought I wrote that article. It is perfect. Perfectly honest, perfectly precise. I myself have late stage lyme. I have missed most of my twenties because of it. I’ve experienced family and friends being much more supportive than I had expected, but they still can’t possibly understand what I go through on a daily basis. I don’t really want them to. Because, to really understand is to experience it firsthand.They don’t understand the hour of preparation it took to come to family dinner. They see a beautiful young girl. In reality I am slathered in makeup to look healthy. I don’t care what they think, but I like to wear it so that I still feel like I am a part of society, even if it is a dull fragment. Thank you for putting it to words, this secret society we are all a part of. I talk to my husband about this frequently. It is the biggest secret I never hid. The last sentence sums it all up perfectly.

    P.S. I mourn my sexy heels too!

  • B

    My mother staged an intervention for “whatever I was on” and convinced my doctor I was bipolar.
    I’m not one to be dramatic with my health issues and look for pity; I don’t openly advertise I’m not well or exploit my disease. If I was having a bad day and not feeling well I’d stay home and rest. During a long “flare”, I wouldn’t function… When I was having a “good” day I’d do the best I could, do my best to function normally…
    There was no understanding because of all the “good” days my family could base how I “am” off of and justify my alleged addictions. Do you know how many symptoms of autoimmune diseases are mimicked by symptoms of severe drug use and alcoholism?
    I’d tell her “no, mom, I can’t come over today. I have the runs and have to stay near a toilet, I’d probably not even be able to make it to the car let alone your house” and she’d tell me it’s from drinking, I hadn’t had anything to drink in weeks. It was my IBS. When I couldn’t breath because I was having an excruciating “hug”, costochondritis, that was debilitating and painful as a heart attack she’d conjecture something for that as well, I couldn’t answer the phone because I was in so much disabling pain I couldn’t take a breath to speak… clearly I was on something.
    Of course I was depressed; I was alone with my sickness, it was affecting my personal, family and social life. The lemon juice in the cut, however, is it’s a genetic thing. My grandma had it, my mother has a variation, as do I. My sister is now developing symptoms as well.
    I no longer talk to my family because of willful ignorance towards each other and I was forced to change doctors to get quality care.
    I still put my best face forward and I still don’t exploit my condition and over dramatize my pain and symptoms but now I let people know exactly what is going on and why… I’ve told people that they don’t actually know me if they did, they’d understand what I am going through. I inform them if I seem normal it’s because of my meds; one for concentration and chronic fatigue, something for depression and my gabapentin for nerve pa… it goes on.
    Even now my landlord who has lupus and fybromialgia says to me “you don’t act like your sick”, well, honey, neither do you…

  • ldsgirl

    I don’t know if mine want to know. They’ve always known about my epilepsy, and that its lack of control early on kept me from doing many things the way I would have liked, but, Debbie, none realize that it had a financial consequence. And most/all seem to be in 100% denial of that! Friends, too! It’s as if they’re in Fairytale Land. Ya Think?

  • ldsgirl

    Ever feel like, when someone shows up, you’re instantly “on”? I do that, like a good receptionist, or an actor in an interview, whenever anyone is there, and sometimes, even docs. Only my cat knows for sure.