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.    

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.

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.

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 (:

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.

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.

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.

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

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

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.

I am in tears..

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

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

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.   

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

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 

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

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

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

LOST IN TEARS…! THANK YOU!

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!

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

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…

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

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