This is the second time I have came across this site; and I too have tried the spoon theory with family hoping to get them to understand. It seems at times they do and then out of the blue they will make a comment that clearly indicates they aren’t getting it. What aggravates me the most is when someone dear and close to you (hubby) will not even take the time to familiarize himself with what his wife is experiencing. If if were my child, my parent, my husband and so on that was going thru something of the sort I wouldn’t hesitate to hop on the web and pull up info and read on it. I am constantly looking stuff up for others as it is when they want to know something and don’t have a computer, for instances like for my grandma or such. I usually just read what others write but I thought I would comment. My mom always says maybe you should find some people who are going thru the same things u are and talk with them; and that is fine and all but what my heart is breaking from is the people I love the most seem to care so little when they cannot find the time or bother to open their mind and heart to actually put themselves in my shoes so that they can finally say…. YES I get it now… What can I do to help?

Thank you so, so very much. Tears are running down my face right now because – like so many others have said – I could have written this article myself. It is funny how many of us “sickies” of one kind or another are out there, yet how incredibly alone most of us feel. I realize that I have so resisted “being the disabled girl with the increasingly visible disability” that I increased my isolation – from the people in my life as well as others experiencing chronic illness.
Thank you again.

Thank You for such a wonderful article. It is like you wrote it just for me. I do not have Lupus, but I do have an “invisible” disease. It is called Spinal Cerebellum Ataxia or SCA for short. It is rare and it is hereditary. We are pretty sure my dad had it but was never diagnosed correctly. It took30 yrs for to come up with my diagnosis. It was discovered with an MRI. The cells in my cerrebellum are dying. I have no balance. SCA has also caused autonomic neuropathy. Thank you again for sharing. I would love to share this article with all of my family and friends. I just learned about your spoon theory today and I am also grateful for that.

I just read this article and for the most part it’s like it was written about me. It’s so good to know as Michael Jackson sang YOU ARE NOT ALONE

Thank you for expressing what I feel every day. I do not have lupus but have severe nerve damage on my right side from a doctor’s mistake during a hernia surgery( btw I did not have a hernia only a swollen lymph node). I went from having two careers and normal life at 31 to this. I am in pain every single day. I have to plan for everything. And I have to decide what I can do each day depending on the pain. I feel so isolated now. Most people don’t know what to say so they say nothing. When I do tell people what I’m going through it seems to be too much. And what did I just hear from my own uncle today???? That my other uncle (who I have seen once for an hour since this has happened) said I look just fine and he can’t see that Im disabled. I let him have it. That will be the last time I take another comment of I look fine. I have heard that comment so many times I can’t take it anymore. Obviously you can”t see my nerve damage. Someone told me today that I look great. I’ve lost 20 pounds in 6 months and it hasn’t been by choice. I was already thin! Anyway thank you for writing this. Although I cried with each line I read, I felt comfort knowing there are other people that understand.

This article hit so close to home that I cried while I was reading it! Thanks! I thank you so much for hitting the nail on the head!! I feel exactly like this so much of the time!

Thank you, Thank you, Thank you.

When I first got DX 5 yrs. ago, I sent the ‘spoon theory’ to my 2 girls who live far from me. It wasn’t but this yr. that one asked why I sent all that ‘stuff’ now knowing just a itty witty bit of the pain I suffer every day. I come from a big catholic family. I’m the middle, cute, funny one. I USED to be. Now I’m the ‘pain in the ass’. One sister recently said ‘go rest’ or ‘whatever it is that you say you NEED to do’. I worked 31 yrs. raising, teaching and loving children. My last job lasted 11 yrs. I had to use the snack tray or my office chair on wheels @ times to get around. Other times I had to hold on to trees while I was outside @ recess due to the dizziness. Funny, the children knew and had unconditional love and understanding, it was the employees who mocked me. Never helped me open doors when I literally had my hands full, having to put everything on the floor, use my left hand to support my right inflamed red hand just to turn the knob, use my body to hold the door open to slide in my supplies and then start the process all over again for yrs. because I was FAKING it. I lost alot of weight but was picked on because I was eating ‘healthy’ and was a pill popper. My boss told me not to park in the ‘handicap’ space because there were other people worse off. Eventually, my 11 yr. career ended when I was fired for ‘abandoning’ my job when my Dr. told me to leave due to extreme dizziness. I may have called out sick 3X in 11 yrs.! So….I had to retire. Mo’s later I recieved a phone call that my daughter was in a fatal accident in a foreign country. I didn’t hesitate to hop a plane to take care of my beloved grandchildren. God had given me extra spoons and the gift of life back to my daughter. Upon her return, not only did she take her life for granted but mine also. She whined that maybe she should have DIED, afterall, I moved slowly and although I cooked, I didn’t nor was I capable of doing the dishes nor unloading the dishwasher to her perfection and WHY THE HELL WAS I ACTING SICK WHEN SHE COULD HAVE DIED? And then………….. my heart was ripped out. Still to this day, I suffer because ‘I don’t look sick’ Every time I read your ‘spoon theory’, I thank God for people like you.

Thank you so much for sharing this with us! You have described EXACTLY how I have felt for the past 4 years. It is refreshing to know that I’m not alone and that someone else knows exactly how I feel. Though I also think it’s sad, because I wish there was no one else out there who had to go through this routine day in and day out.

I don’t have Lupus, but I have several other illnesses and 2 that they are not sure exactly what it is therefore the root cause is undiagnosed but debilitating nonetheless. I take 28 pills a day, plus a minimum of 5 shots a day and I’m only 29 years old.

Thank you again for sharing this… I don’t feel so alienated and alone anymore.

Invisible illnesses stink. I have fibromylagia, which affects me the most. But I also have ITP, a blood condition, and battle with episodes of depression.

My immediate family is very supportive but it has ruined my relationship with my mother in law. She had the nerve to tell me that if I would lose weight and exercise I wouldn’t have any problems. Needless to say, I don’t talk to her anymore. And the irony is that she is always complaining how much pain she is in because of her arthritis. And she abuses pain meds because of it.

I lost 30 pounds in 3 months time simply because I didn’t feel well enough to eat. Everyone compliments my willpower but the truth is that when you hurt, you don’t want to eat.

So when the fibro hurts so bad I can’t think and I get depressed, well, I think that I have plenty of pills that could solve my problem.

And yet, I rarely tell people what I have going on because I don’t need pity and as you say, “But you don’t look sick, you look great.” Really? Tell me that when I can’t stand to be touched, when the pain is so bad that even my hair hurts and I take to the bed in tears. And trying to work? What an adventure that is when from day to day you don’t know if you will be able to function.

How did you get in my head? I have so many things I want to share about that. I just can’t find the words right now. I call my bag my circus act!

Hi Christine – I just found this website and I have just read this posting and I am in tears. I have Lupus, Hashimoto’s, and Sjogrens Syndrome and I think you and I are twins…lol… Every word you said is me. I feel very alone sometimes and so very afraid to show how I am really physically feeling because if I do, I never be able to back to hiding behind the smile. Once the dam is opened I fear there is no return to pretending I am ok. I am so exhausted all the time my body feel like a sack of lead, I can no longer concentrate in my job that requires me to be attentive to detail as the brain fog is debilitating, I have terrible digestive issues (upper and lower)… well, you know the drill. I just wanna be normal, I wanna have energy to live my life…even just a bit.
My mother is always after me to slow down, take care of myself..etc…stay outta the sun… but I can’t…I won’t! I need to have kind of normalcy even if it means that sometimes I don’t have enough “spoons” for the following days to come…to me, it’s worth it. If I die 5-10 years earlier because of it, then so be it…at least I have had some fun and lived a little. Do feel the same? I am sure you must judging your postings and by the tone of this website. Which is why I think you and I have alot of similarities in howwe view our illnesses.
Thank you for creating such an awesome venue for all of us people with chronic ilnesses to vent and to find how others survive the daily grind of it all.
Cheers to you 🙂

Thank you for posting this. You eloquently described how I often feel, and while I am sorry that others have to struggle as well, it is nice to know we’re not alone.

That is exactly how I live my life. Everywhere I go (when I can go out) My husband and I enter a crowded room sit to the side by ourselves and by the end of the night everyone there is standing around our table saying your so awesome and funny heres our number whats yours. Thats when I freak out, because this is probably the last time you will ever see me (until, lets say close to this time next year) when I feel like maybe doing something again. My husband is out alot more, and people come up to him and say, where is your wife she is so awesome we love her she is so much fun!!!!!!!! He just says well when she feels like it she will get out again I don’t know when that will be. They say awwww she needs to get out more thats her problem she never gets out of that house. He just says yeah maybe so, well I gotta go, and he leaves.. We lost more friends when we were younger because the next time they saw us I was in bed and not any fun. I so understand this whole story, it was like you wrote down my life for me!! Now that we are nearly 50 it’s okay for me to not have any friends, I got so tired of acting, I acted a month ago and that was the last time I have left my house… and I’m fine with that… Everyone else has a problem with it, telling my husband what I should do to feel better, but I’m just fine sitting on my back porch or in my bed and enjoying the silence and not having to play a role!!! Been there done that, NO Thank You!!! lol…..

I have been acting since it all began — at 5. Diagosed in my early 20’s. Just realized husband of over 10 yrs has NO idea how bad it really is. Mom stayed for 2 mos and said she FINALLY understood the stress on us and our kid.

I hate to be with people b/c I don’t want to sound stupid, drunk, rude…

This year I have worked SO HARD to be able to “pass” as a healthy mom at pre-school.

My depression and pain are the worst they have ever been

YOU ARE NOT ALONE. You wrote beautifully and helped many of us who just CAN’T write it all again.

I don’t know when or if it gets better. I don’t know what “better” or happy would be.

much love and hope xoxo
June

Oh boy, do I get it!! I have fibromyalgia and all that comes with it plus arthritis in both sides of my back. This year on Passover, someone said to be Oh, you look great (I’ve lost 50 lbs). I said Thank You! She said you look like you’re feeling better. Mind you she knows about my health and that I was taking anitbiotics for a sinus infection. I shook my head no and she snidely remarked, Oh, well the, you must be a very good actress! I was so hurt. It’s been a tough road with this invisible illness right from the beginning since 1999. Overwhelming fatigue, pain, insomnia, emotions all over the place, IBS, I won’t go on. I’ll just say no one understood and many still don’t. My mom wants to move to Florida to be near her sister but I know the humidity will just kill me. No one wants to hear that though. I take meds to sleep which don’t always help. Then I hear it from people if I sleep too late during the day. I can’t win. Thanks for letting me vent.
Love your fellow spoonie, Amy

These words are exactly how I feel. I have MS, fibro, IBS and others. I live alone, and have no friends or family that call or come by. I travel alone. Meeting new people is a chore, I don’t want to have to explain, why I don’t work and why I live the way I do.

I loved reading this! I have Ulcerative Colitis (Which I know Lupus is worse) But I feel this way! & i could never explain how I feel and You just did that for me. Thanks! <3

Wow- thankyou for saying what I have wanted to put into words so many times and have not been able to. I have lupus and yes – everyday I am reminded of what I cant do – so I push on with a smile -until I cant any more. I think the most important things we can do for our selves is just by focusing in to own own bodies and giving it what ever it needs. The second is by having people around us that can try and be willing to understand what we deal with. Love& Peace- Julie

It’s like being in a world, where you do not fit. Where the general public judges you unfairly and cruelly. Where memories of who you “used” to be, now only hurt upon recollection. I get so tired of being sick, I think you understand.

You have just written down exactly what I think every day!! Thank you for that!! I hate people knowing how sick I really am, how scared I really feel, and wondering every night before I go to bed, sometimes, not sleeping at all, because I dont know if I will wake up the next morning, and if I do, will it be a good day or another “sick” day. I am a christian, and it seems that people expect more from me, expect me to be miraculously healed right away, and because I’m not, I fake it a bit, to avoid the questions…and my faith is unshakeable!! I pray sometimes that today would be the last, so i could finally be just free from the me’s that you describe. I, like you dont mind people knowing I am sick/ill, but I dont like them knowing how badly i really feel. When people did know how badly I felt, I noticed that I lost them, so I say nothing now, and fake my life away, doing way more than I know I should or the doctors would permit, if they knew, but I am dying anyways, so I might as well live it up!! But then I worry that I wont be at home alone when I finally pass, and boy that would be a hard way to go out, making the people around me watch, and in fear, wonder if they were so out of touch with what was going on that they pushed too hard, and the last thing I want to do is hurt anyone else. I am lonely, sad, scared, and feel badly most of the time, but no one knows!! Thank you for sharing the truth!!

I am so glad I found this site. I am with “my people” I think. I want to give my website or stay in touch somehow. I will look for a chat room somewhere on this site.
First of all, Ellie (Suzie’s sister) I wish to God my sister Chris, and my brothers were like you. Please, send me a sister like you. You are amazing with your understanding of what a day is like in chronic pain or illness. It is a job in itself. It is. And I have 2 best friends left. My family has all disowned me since I won’t do what they, being dr.’s, not, and all tell me to do. Oh, and my disease must be an excuse like one woman said to take drugs that get me high. Yeah, I gave up a good paying job and a life to take mild opiods. If I feel high then I’ve taken too much. I did have a doctor who had kept me on a very addictive pain med, and a host of other meds, too long and I did have to find another doctor to help me off. My ailment got better with chemo that is orally taken daily and I no longer needed the huge amount of pain meds he gave me. That was made into such a drama they don’t accept that I need a low dose pill to make it without help. I mean are they going to make my bed or do the cleaning? Or the bags from the grocery? no, they didn’t even visit when I was sick.
As far as talking about my illness in depth, I agree that it’s sad we can’t really know how much people really care, but they do and I’ve learned from my dad who is in remission from bone cancer to keep it brief. They want to hear your going to be ok, he said. I was going on and on with details about radiation and I was boring myself! He finally told me a hard truth, just say yeah, I might need another test, surgery, whatever but they say everything (me) will be just fine. It’s going well, so how’s jack and everyone? Going down south this winter again. and before you know it, he’s laughing like he always did and is such a popular person because of this. I’d rather talk like I always did and be a clown rather than see people run away from me in the grocery store, it may be my only social part of the day you know?
I feel like I have found the most knowing group of people. Please tell me how to handle losing my family to this controversy. uggghhh, the lonliness of not being included or wanted any more. I did complain maybe too much when I was scared but why won’t they get over all the mistakes I made when dealing with this in the beginning when I was really scared. I want to have my family back.
permission to publish my email. Thanks

Made me cry because I feel exactly the same. People ask me “What have you done?” I can’t be bothered to explain any more, nor can I stand up long enough. Got drunk and fell over, Fell out of a plane parachute didn’t open, Ski-ing in St Moritz, just any old excuse that comes into my head at the time. People don’t want to hear the whole sorry story. They have their own lives. Only a handful of people know the truth. Christine, keep smiling, you are among people who know and love you and want to know how you are feeling xxx

Thanks for sharing. I’ve felt the same many times.

I especially struggle with how much to share with other people. I don’t want people to dismiss my illness as no big deal by keeping it all to myself, but I also don’t want to come across as whiney.

“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.”
That sentence really says it all.
I can so relate.

thank you for sharing.