Thank you for putting this so eloquently. I have had a chronic illness since birth and developed fibro in the past year. My husband gets so confused why for a couple weeks I'm happy and energetic and then, seemingly out of nowhere, I'm telling him I need a break from going out and instead want days and days of just relaxing in front of the TV. He is learning to not measure my abilities/energy in relation to his own. I can have good days, weeks, maybe even a month, but eventually I will probably have a day, a week, or a month where I barely get by. Right now I'm in a barely get by sorta section, sick and achey. I do the bare minimum to keep my life chugging along, hoping to avoid a trip to the hospital. Almost always happens in April, and I'm usually better by May (fingers crossed!).

Beautifully written. I can totally relate.

You hit the nail on the head... I hate being "unreliable" but as you say, when you are sick your choice is between being unreliable and being completely absent...

You have written what I can't verbally put in words. Thank you!

This is the first time I have heard anyone else put into words what I feel everyday. It's amazing! I feel like you were in my head when you wrote this.

I loved your story- I hated the reality of it. I hope you know that I do understand, but I still get disappointed, not over the broken plans, but just that I miss you and want you to be healthy and happy.

I couldn't have said it better myself, having CF. I am sending a link to this to hubby, friends and family so that they may get an inkling of what we have no choice in dealing with every single day of our lives.

You are a talented, eloquent writer, Christine!

Your story fits me perfectly. Even though there are times I feel my family dosen't understand. I have been dealing with this for over 20 years and having to explain or apologize is getting old. Thanks for your positivee posts.

Christine you have perfectly explained this disease. You should print this into a card and have every doctor give it to their newly DX'd Lupus patients. Maybe then their families might understand the hell of this Lupus. Maybe the newer patients could save their energy on feeling well instead of expending it on explaining to their loved ones.
Thank You for a GREAT essay.

It's like you tapped into my brain... through the past 5+ years of my chronic daily headaches, I have had to plan day-to-day, cancel last-minute, feel guilty, been told not to feel guilty, feel guilty for feeling guilty... I am going to share this post with friends, family and my fiance.
I also thank you for putting our collective struggle into the perfect words.

Christine, this essay is so beautiful. It's as good as the spoons one. It goes right to the heart of it.

I hate it that I can't trust myself. I hate it that no matter how much I want to do something, there are too many times I just can't do it. I hate it that now that I have nothing pressing my time, now that I don't have school or a job, I don't have any more time than someone who was working or going to school -- that I have all the time in the world and hardly any time at all.

I can't count on doing anything that has a plan or a deadline. I was going to start doing some Blue Wool lightfastness tests on oil pastels in April and it's now up in the air whether I'll be able to or not. I may have to start those in May. I may have to start them in June if I'm not up to doing it. This bites.

Thank you for reminding me that it's not just me. It's a rough situation and it bites.

Robert

Fits all of us with chronic illness I'm sure.

Good read.

If only the people who don't believe us would read this. The ones who give us the looks and call us hypochondriacs. I have emailed some people in the past with other great articles from this website so they could understand me better (it isn't only me!)but only one out of say seven people called to say they know me better and what I live with. I think most saw a few lines and deleted it. I am not a whiner, I just want understanding among my family and friends. It is so frustrating.

Perfectly said... This is how I am going to describe the roller coaster of pain I am on... It makes things easier to explain to those who just can't grasp the concept.

Describing my life is difficult and this story just did it perfectly. Thank you for putting my thoughts into words for everyone to see....It is so miserable having to explain over and over. I have finally shut everyone out and feel like I have become a hermit...

My wife dealing with day to day issues, I have never really understood this completely until you so eloquently described it. I am a healthy man, and my family members are all in perfect shape and with the exception of my grandparents (who are in their 80's) no one takes medications. Seeing my wife who is in her early 30's, it's hard for me to comprehend that she is in serious pain. I am the first to admit when I am wrong, and I try hard, not only as a person, but as a husband, to always see the other person's points of view, get on their side of the table, but I could never get past her age, and comparing her to myself, and thinking "she's too young to have health issues". It was difficult for me to percieve and accept the pain that my wife feels on a daily basis. The part that hurts the worst is when you described yourself as "not being believed" and also being called a "Hypochondriac". I openly admit that have joked with her as being a Hypochondriac, and I feel ashamed for even thinking it, much less saying it. You have really opened my eyes to what one goes through at home and often times deals with...alone. Thank you for your writing, and it has certainly changed my views towards the daily challenges my wife contends with. I never knew that there were others in the same situation. This has made me look deeper into her illness, and be supportive of her in every way I can, as she has always been for me. Every husband should read this for a broader understanding. Again, Thank You!

This describes my life in a nutshell and I agree it is very difficult trying to get others, even when they love you and support you, to fully understand. I think that empathy may only go so far with most, as they haven't experienced the roulette effect. Thank you for helping us to feel that we are not alone by sharing your experience.

This one is great, Christine. It's so true -- your metaphor of the roulette spin is elegant because that's what it is. None of us asked for this. None of us even went to a casino and decided to bet our health against something -- just being born is that bet.

Parents don't always get healthy children. Sometimes when they count fingers and toes, the count is off and the child isn't normal.

I've been called hypochondriac all my life and called crazy and even the dang doctors all thought it was psychological because my circumstances were so rotten I should've been depressed and insecure. The thing is, no one could comprehend how physical it was. They all read my scoliotic posture as body language. They accused me of "pretending to limp." The fibromyalgia goes so far back I can't remember not having it, so every time they raged at me, they cut off any good days I was having.

I have trouble comprehending how I survived my childhood and the more I know about what was wrong, the more I know how narrow a line of survival I was walking back then. I could never keep up. I could never keep a schedule. I could never even manage to get up in the morning and function -- of all the things that were consistent, that's the biggest.

I can count the days I could function as soon as I woke up on one hand, in over 50 years of living. Yet no matter how consistent it was that I fell over, stumbled, couldn't move, fell apart and could not function, none of them ever believed anything was actually wrong. Your essay brings back how it felt growing up with people who believed I was physically whole and mysteriously depressed.

This essay is wonderful because people who have to live with us or who love someone who's got chronic disease do need to understand what it's like. The worst, other than losing my family, was when medics -- doctors, nurses, aides -- didn't believe it when I reported symptoms.

I hate not being able to plan anything. I hate not being able to be reliable or complete things on time no matter how well I schedule them. I gave up on it entirely and just set priorities, then do whatever's actually in reach for that day or that hour.

Then hope it's enough, because when it's not my life falls apart. I wound up evicted too many times. I wound up losing jobs. I wound up homeless. I wound up losing important necessary possessions and having to replace them repeatedly from moves that went bad.

I'm moving again now and struggling with an entire month to pack, with trying to do that myself so that when we get there, I'll know where it all is and have less trouble settling in.

There is something like this that I found in a movie and a book, Stephen King's "Shawshank Redemption." When he sorts out how he feels about the false accusation of murder that got him thrown in jail, Andy Dufresne says "I was in the path of the tornado."

That's what it is.

It's luck and that kind of bad thing can happen to good people as easily as anyone else.

Thank you, my sister and I both have a chronic illness and as others said - this is exactly how you feel all the time.

I can't thank you enough. I have Ehlers-Danlos and was recently diagnosed with Osteoarthritis. My husband just didn't get it and I felt like he wouldn't even try. I sent him Roulette Kinda Life and apparently it made a difference. I cried for an hour after I read his post on it. He finally gets it! or at least he's doing a good job trying to. I would scream "Thank you!" from my roof top ...if I could get up there and if you could hear me. ;o) In one short article you have done what I couldn't do in 8 years and I will be forever grateful to you.

Once again, Christine explained in her words EXACTLY what my life is about. from the days you're a Dancing Queen to the days you can't leave the flat; from the trips to the jungle to the days you just sit in pain and pretend you're OK. The day you excel at work to the day you call in sick. Every moment of my life are planned a week ahead and yet I do not control anything. And from "you don't look sick" to "no, you're not cancelling again!?" , having to explain yourself all the time, again and again... I've suffered from Fibromyalgia since I was a child, that's almost 33 years of apologies. It makes it all more painful, frustrating, enraging, exhausting. Hopeless. And then, because you've decided to not let yourself be wasted by an unfortunate condition, and with hard work, you finally build yourself a network of doctors, workmates, friends who understand, or if they don't, who don't judge, accept you the way u are, support you and for some them, even protect you. Thus give you hope, and that's what makes ur life so beautiful.
THANK YOU CHRISTINE.

Christine,
Thank you for your beautiful writing. Your web site is terrific. I have Lupus,MS and Fibro. I look forward to your email everyday. I also can relate to this, as my family has a hard time understanding my illness as well. I wish they would just understand instead of ignoring my problems sometimes. They mean well, but just don't get it. Thank you again, keep up the good work. Spoons forever !!!

Dottie