Wow, what an enlightening post.

Since I've recently gone into the medical field I tend to collect data from everyone I meet on anything medical and I'm sure my questions come off as insensitive. I will keep tabs on that.

I couldnt believe it as I read your words. You spoke every single solitary word in my own heart and life. EVERY one!

Our diseases are not the same, but the outcome is.

Thank you sister of my soul for writing down for me my own thoughts and feelings. I am going to save this post and reread it at times that I need to.

Here's mud in your eye ;)

Hi, You have written what is in my heart and in my soul. I should have won an academy award by now as I act every time I go out, even when I am home and someone unexpected calls.

The joke is that back in the 1980's I once was a part time actress and then went onto a career in youth work until my life was ravaged by illness and pain. It has never been the same since.

I am sick of pretending about how I feel and who I am. However I often feel what choice do we have because as you say "who wants to hang out with the poor sick girl".

So until we are cured or leave this mortal realm our afflictions remain hidden and misunderstood by other's except those whom we trust to keep close.

Have a Merry Christmas and I hope that you don't have to "act too hard".

from Caroline.

I had a sister who had a mysterious disease that was finally diagnosed as vasculitis. She died 3 months ago of an overwhelming infection because her immune system was weakened by years on prednisone. Because of your sensitive sharing of your own feelings, I finallly know how she really was feeling when I would ask how she was. I wish I had known then what I know now. I would have asked instead, what can I do for you today? One happy thing I did do for her. We went on vacation together on the proviso she could rest when she wanted or needed, and could say no to any activity if she wasn't up to it. Of course she also expected my husband and I to go ahead with the activity. We had a wonderful week together. Then her tragedy struck and even the best doctors in the country couldn't save her. I am lucky to know her last week out of the hospital she ate what she wanted, enjoyed musical outings, and swam in a lake with me.

Your honesty is wonderful to read. It inspires me to continue my journey to find the authenticity and humor in my MS. Thanks for sharing.
Julie
http://lazyjulie.blogspot.com

I am speechless, in awe, overflowing with compassion and my heart is racing for 2 reasons. A family member sent this to me so I could better understand her daily life and also because it could have been copied from my own journals. wow ....

That's the reason I love this site...to know I'm not alone. As the others have said, you spoke what's in my mind and heart. I'd love to show this to my family, but I don't think they'd take too kindly to it. It helps me, which is all that matters. Thank you for writing!

Thank You for speeking out for so many of us who suffer in silence. Family and friends try to understand, but sometimes fall short. I feel your words came from my heart and you posted them for me. Thank You and Bless you!

What an amazing essay! It echoes so much that I have to live with. The other day I was going somewhere and met a person from work. He looked at me in concern and asked, "What happenned?". It took me a moment to figure out the problem - I was using a cane. I live very close to work, so I can get away without using it, and maintain my "healthy" facade. This costs me some pain sometime, but facing concerned questions and unsolicited advice is often worse.

I will have to go home to see my family this summer, and I am dreading it. I maintained the "happy and healthy" personna for them for as long as I could, and this year I will be forced to use the cane. I wanted to put off the inevitable fuss about my health and my inability to find a cure, but now it may be worse because the change will be unexpected.

I really need to share this with family and friends. Today is my 38th birthday.

I still have a tough time not being angry with myself, short tempered with pain or embarrassed at large wheeled bags, sitting on the front of the bus, asking for a set in front, asking for a seat anywhere - canceling on friends...

I have Sjogren's Syndrome.
www sjogrens org, www sjogrensworld org

Sending some love out there,
Paige

It is nice to know that I am not the only one out there that is going through this, yet at the same time, I wish I was so that no one else would have to suffer through these "invisible illnesses". Thank you for sharing a piece of you.

Thank You Christine for opening up and sharing what it is like I identify with you on so many levels I too have a invisible illness I have Fibromyalgia and Chronic fatigue Syndrome and I have a limited amout of energy and I have to spent it wisely and mangage it well. Thank you so much.

Wow, what a great read! Took the words right outta my mouth! I LOVE your HATE list!!! Thank you for expressing how you/we feel.

Thank you so much. It's what I've been feeling right now. Thank you. Thank you.

Wow, it's like you took the words right from my brain and posted them. I can completely relate. I am constantly saying that I feel like an actress, and have felt like that for the past 4-5 years with my chronic daily headaches... unfortunately, we don't get paid for this kind of acting, and we don't have an understudy! ;-)
Keep up the awesome work...

Wow.

I agree with all the above comments, and would just like to [slightly] mis-quote someone famous (famous to us Brits anyway lol!), I think of him whenever I'm on the site, think of you, or just think about spoons...

"Never in the history of invisible illnesses has so much been owed by so many to so few. Well, one person actually!"

Thank you Christine. For sharing some of yourself and letting us in, and also for giving me the words, phrases & strength to express how I really feel to those I have to live with.

All the best
James***

You hit the nail on the head.
I have a little different set of circumstances. I had to quit my last job because I am too ill to do it anymore. I didn't do my job on a hospital unit but in education but was transferred to a different job that I swear was aimed at knocking me off (sometimes I felt so sick I almost wished they'd have succeeded, as terrible as that sounds).
I'm a nurse; my mom has a long list of illnesses and is getting worse; my husband had his 2nd surgery in less than 6 months; my son helps me and he's a type I diabetic.
What I get is accused of being lazy and attention and medication seeking because what I have doesn't put you in a hospital, it just makes you feel cruddy all the time. I can list 24 ailments, some minor and some major, but my family's doctors all expect me to do a complete and impartial nursing assessment on my family members and not miss ONE THING - I get berated for it.
Only my son's doctors don't get away with it - because he tells them I'm his mom, not his nurse, and we pay THEM to do that sort of thing. He's even asked them what they're paying ME to do their work for them. But secretly, I think my mom and my husband don't really believe there's anything serious wrong with me. They have an attitude of "humoring" me but Mom especially has intimated that I am not right mentally.
And when she was in a rehab center, subacute, we found out just how much work nursing homes are. The facility calls you to complain about your elder; they call to complain about the facility; every little thing costs extra; any medical treatment they don't think is necessary you have to provide and get their permission first; and then they slap you with a huge bill at the end. There was never one day's break, and because the shareholders need to make a profit (all NHs in my area are for profit), they hire enough quality improvement people to make the place look good on paper but not enough workers to do the job. And you never know what type of roommate they're going to stick you with. Some of them are real trouble. One of my mom's ex roomies in that place had gone through about 7 additional roommates before Mom came home from the rehab.
Fast forward to home health and guess what, no relief there, they still expect a full nursing assessment, totally error free, and sometimes I can barely walk from the pain and fatigue. And I don't even pretend anymore.
So don't worry about dropping pretenses - people will provide them for you. No matter how sick you are, they will still have the expectations they want to have of you, no matter how sick you look or how badly you feel.

Christine,
That was a very good read. You put to words what is in most of our hearts and brains. My Dad suffered back to back stokes early this year-2008. Since I live the closest to my parents-I became the main caregiver. Yes, I am older with grown children & I don't work because I am on disability-but of course that doesn't matter because my brothers feel that my parents were there for me thru all my hospitalations and for my kids when they were young in my first DX'D years. However much I understand their feelings-the bottom line--is---there is still no acknowledgement that their sister is sick and being a caregiver to my Mom as my Dad is stuck living in a nursing home & Mom doesn't drive and has always been a nervous wreck & is totally dependent doesn't seem to phase them at all. They just expect it!!! I do it because of my love for my parents & I have had a few crashes (flares) this year. Sorry for ranting, but, I just wanted to let you know how much I appreciated your post and to tell everyone-just take it one day at a time-because it is all any of us can do!!!!!! Thanks for listenning--Love, Patrice

Christine,
Posts such as this one are the reason I love ButYouDontLookSick.com. Without having to explain *anything*, my entire life is understood and all my worries, insecurities, frustrations, and feelings are validated. This sense of "normalcy" (as in, the way I am feeling is normal for a sick girl like me) is so heavenly when the world doesn't seem to understand.

This post made my day - I am going through a rough time right now (my own health and family members' illnesses in addition to moving to a new city to start grad school and leaving my SO behind until some future date). This post makes me feel at rest with all these crazy feelings and I thank you.

YAY for people who understand...and I can't wait to get a big bag like yours (mine is currently my huge backpack!).

Hay Christine,
Call me obsessive but i read your essay twice. I must say good on you for letting out who you really are. As being some one else is extreamly fatiguing. I only learnt this lesson this year - glad i did though.
Going through chronic pain and fatigue is neither easy or fun, but life changing. A Day at a time my Rheumatologist says - i get it now!!!!!

Any way well done once again, and you being you - a great mum, sister, daughter and wife.

From Mellissa Gaynor.

thank you for the wonderful words! i believe it is true we cannot live in two worlds--we have to make a choice, take us as we are. we have to learn to deal with our fear and accept who we now are. there will be lots of struggles, good days and BAD--but we will always have "invisible" friends!

Great essay, Christine. This one really hits the nail on the head. Even though I'm one of those people who might say "I need a nap," or "Aw dangit I forgot my meds" or very very often "I have to sit down now, I can't stay on my feet that long."

I can see why you don't want to be seen with a cane or wheelchair. I get angry at the condescension and the way they expect someone physically sick to also be a little dumb in the head or to act like a child. And hold the gratuitous medical advice, most of which I've heard a thousand times and would do serious damage to my health if I did it.

Thanks for this rant. You've reminded me women have a lot more to do to keep up appearances in this culture. Me, I like the pallor, it works for a creepy goth who always wears black.

But I want the power chair, want to get out as if I could walk and be able to keep up without always being left behind.

Robert

This was a great article. The two main things I have had to deal with is the fact that I have not been able to drive for the last 3 years which puts me completely at the mercy of others or public transportation and the fact that people don't like my "maybe" or "probably" answers when scheduling things. Other than doctors appointments, and sometimes even those have gotten canceled on really bad days, but social events I refuse to give people a definate answer or a promise. I just can't and that frustrates people, especially my family. My family is extremely long lived and my great grandparents are in their 80s and still in excellent health. They have some arthritis, my great grandmother to a pretty bad extent, but nothing that keeps them from doing anything. My mother is in her 60s and has fibromyalgia but is still in a very active profession. So I really believe that they think I am somewhat lazy or don't try as hard as them or some sort of judgment since I am home on disability in my mid 30s. And it hurts knowing they feel that way. I try to be the best mother, daughter, great granddaughter, niece, etc. that I possibly can. I guess I somehow have to learn to just be good enough for me and not worry if I am good enough for them.

Wow.

You really blow me away sometimes. It's so awfully uplifting to hear your struggles and be reminded that there really are people out there going through the same thing that I am and that I'm not a crazy hypochondriac...that it takes far more emotional and practical effort to be sick than it ever took to be well. This one made me cry...for both of us.

I also have lupus, I'm 24 now and was diagnosed 7 1/2 years ago...I was just diagnosed as also having the limited systemic form of scleroderma and pulmonary hypertension, which has left me in an awful place with both my health and my head. I don't know how to act like I'm normal anymore...for a few years there I was pretty good at it, but as the good days became fewer and fewer and more friends dropped out of my life and I became unable to work I just stopped trying...it hurts when it's depressing to just be yourself...

Nice post. If I felt that bad all the time, I don't think I could work up the motivation to appear healthy. On the other hand, I also might not have the energy to deal with explanations about why some medical solution people are proposing doesn't work.

I had to let you know how much your article meant to me! It's always hard for me to find the words to express how I'm feeling or thinking and you said it so well!

I'm really bad tonight and my pain was greatly exacerbated by cleaning out the litter boxes tonight. This is always hard for me...any suggestions????

carolann

Maybe getting sick when I was older stripped me of the need to appear normal, or maybe it was the fact that my first symptoms appeared temporary, but as this mess of symptoms has dragged on over the years and grown more than ten names, I've realized more and more how lovely it would be if I could just pretend to be normal, even. And aside from the cane, I look fairly normal, until the loud noises or the bright lights start or it gets late or I try to wear shoes with heels or I need to take my pills or . . . I know you understand what I mean, as your essay above proves it. Your website is a gift to everyone who suffers from invisible diseases, a chance to know that we are not alone, and to know one another in a kinship closer than blood.

It's not acting. Nor is it illusion. It's a little of who you were and what you were like before getting sick.
When I go out, I try to be upbeat and charming and very friendly - but before I go out I determine if I have the energy to go out. Because being the old Shannon who I miss so much requires a lot of energy. It's acting, but it's not lying. I'm simply showing a part of myself that is ordinarily swallowed by illness. It's still me, though. It's more like a flashback of me, or a memory come to life. But I can only do it for a little bit, and only with time to rest between outings. Because being a butterfly, even the social type, takes a lot of energy.

Thank you!! I feel like the words you typed out and posted were words that have been so heavy on my heart and locked up for years!! You can only "act" for so long and it truly is hard to let people in to know the real you and the unfortunate sickness that affects our lives. So many people say that want to know how you are doing like you said in your article, but do they really?
Again, I thank you for opening up and sharing your deepest feelings with us.
God Bless You!!

Thank you, Christine. {{{hugs}}} Today is one of my non-acting sick days and I just don't have the energy to say more...

Christine,
you hit the nail on the head! This is just how I feel....most of the time~ I have a very good friend who is healthy and she does not seem to grasp what is going on...even though she is one of my best friends!! And then I have another friend who has an autoimmune disease also who gets it!! It is such a balancing act and some days quite frankly...I do not want to balance...I just want to lay in bed and vegatate....some days...I just want to hang out with my kids in front of the tv or with a good book...some days I wonder "why me"..some days I question my ability as a wife and mother~ and then other days....I think I must just accept it and know that I can only do what I can do and those around me either need to accept "me" or just move on...I don't have the time in my life to try to impress those around me...I just want to be able to live and love while I can because as "we spoonies" know there is nothing is certain in our lives...they change moment to moment day to day hour by hour...nothing is for sure~I have lost friends and loved ones because they just don't get it....and you know that's alright because I don't have a moment to waste!
Blessings,
Vikki

Christine, that was absolutely amazing and exactly how I feel! Thank you for sharing this with us. Wishing you many more Spoons!

This is everything I feel and yet never have anyone to tell that would understand. I have been feeling really alone lately. Thank you for this.

WOW is all I can say, you brought me to tears it is nice to know I am not the only one out there. I have RA but I feel the exact same way. Keep strong one day we won't have to act anymore. Empathy is far more powerful than any sympathy could ever be.