Wow! A few months ago, I observed to a close friend that I guessed I shouldn’t be surprised that people don’t understand my limitations, because I work so darned hard to hide them. This is written in a similar vein. I have SLE, among other medical conditions, and am slowly starting to trust more and more people to see the “real” me. I am not bitter, but it is a little scary to know that you can’t be relied on, especially when you’ve always been the organized, strong, supportive one — Mom, wife, friend. I have disappointed myself so many times, getting frustrated with my body. My Lupus support group leader said that she used to have a type A personality, and that now she’s a type “whatever”. I’m undergoing the same transformation.

I would like to add that I appreciate the comments from caregivers or friends/family of patients with chronic illnesses. My husband also knows that I put on a brave front. Just the other night, he came home from work, and I was “resting”. He asked me how I was, and I just didn’t want to answer. He asked me what was wrong, and I just said the word “lupus”. He told me that he wanted to give me a hug, and I told him that I was fine and didn’t need one. Luckily, he knows me better, and decided to climb on the bed and hug me anyway, getting me out of my funk by empathizing, finally eliciting a genuine smile when he gave me a little nip on my neck later on. It turned out to be a great evening after all :o).

I am very grateful to have him in my life. He tells me that he wouldn’t have things any other way, but there are times I know that I am causing him stress, or that he’s holding on to him own issues/stresses, to spare me. We’ve had the don’t-make-decisions-for-me discussion. I want to be offered the choice, even if I have to say no. Strange, but important, difference. It helped to read about the feelings of those closest to us, who really do care, but are confused about the messages we send, and what they can do to help us.

I mean, I would be confused too. There are times when I’m teaching and practicing martial arts in the dojo, taking ballroom dance lessons with my husband, and other times, I’ve been in bed for months. I’m a 52-year-old woman, with two grown children and two grown stepchildren, having “retired”, after having been on LTD since 1993, last year. Some days, I am super woman, really, and I feel like it. Other times, I feel weak and unable to even type, due to the pain in my fingers or somewhere else in my body (currently exploring voice-to-text software). Not only are there many different “face” of lupus, in terms of how it manifests itself in each individual, but each individual seems to have different “faces” of lupus, in terms of the extremes that occur with our health. We are desperately trying to build up the strong image (which is partially real), while minimizing anything that reveals are weaker side.

Having said all of that, I have also reached the point that, on most days anyway, I do my best to savour even the littlest things. When I was a busy working Mom, I don’t think I got a chance to appreciate those things. I’m not going to claim that lupus is a blessing, but it does force us to slow down and really take a look at ourselves and our lives. Some people live a lifetime being human “do’ings” rather than human “beings”.

Thank you, Christine, for stimulating a discussion on this subject. I sincerely hope that the feedback that you get, in some way, helps you yourself, in dealing with your own concerns regarding lupus.

I am in tears the beginning hit me hard both mentally and emotionally. This is such a great article that explains the roller coaster emotions and daily struggles of living with Lupus. I am going through a transplant process because my kidney functon is gone. I waited years to hear the good news and well just speechless. If I were to describe my daily struggle this articlel does it superbly. My father is donating his kidney and I know for the rest of my life I am always going to have health problems. I am grateful thus far to be a survivor a lupus warrior. There are days I want to give up but I am still fighting everyday. I value and cherish each day that I am given. I am happy to know I am not a hypchindriac anymore and finally know what to call what I have. Thank you so much for this article and may all of you find peace strength and courage to keep going~

Christine, cannot say how much I appreciated this today. I think sometimes it is un-helpful to pretend because it confuses people, but sometimes it is easier for me because I just don’t want to deal with it. That is where I am today, wishing the pain and fatigue would go away so I could just not deal with it….sigh…..

Liz, I can relate regarding the hypocrisy of the workplace management. The organization where I worked had committees working on human rights, women’s rights, indigenous rights, the rights of people with disabilities … and yet the organization itself violated those same rights routinely when it came to its own staff.

Others have mentioned how people seem to feel entitled to preach to us about how we should cure ourselves–how dare they! A related but even more disturbing attitude some people have is that we have brought our illness upon ourselves by negative thinking–so not only do we suffer but we are told to feel ashamed of it as well.

Very true. I’m visiting family I have not seen in a couple of years right now so I’m trying to do my best and not seem sick. We are also visiting a family friend who I don’t feel the need for a mask as much. The other day she told me “just go lay down so we don’t have to see you in pain anymore” I know she ment it kindly but that is exactly why I put on my mask and fake how I”m feeling when I go out.

I did laugh at the big bag and preparing to go out, mine doubles as a knitting bag so I can sit quietly in a corner and knit while zoning out and waiting for meds to kick in.

Christine,

Your explanation of daily life; fear, pain, anger, trust- I know how that is. I have few in my life that understand what it is to be in my shoes. Most think I can just ‘suck it up’ and ‘deal’. If they had just 15 minutes in my shoes, they’d be in tears. I do not have Lupus, but I do have an auto-immune problem causing a spinal condition that is causes me constant daily pain. I will have to have surgery some day just to stop the deterioration of my discs and fracturing of the surrounding vertebrae. Not to mention straightening them.

One morning in July of 2007 I went to pick up my baby girl, just under a year old, and less than 15 pounds (she’s very tiny). I took her out from the crib and I was in such pain I couldn’t breath in. I screamed to my husband to wake up and take her, I was dropping her. I had no choice. My body would not let me hold her, she was too heavy. He took me to the emergency room right away and I’ve been seeing doctor after doctor ever since.

I take narcotic pain medicines multiple times a day, prescribed by my doctor. I feel more ‘loopy’ than I do normal most days. I’ve had to cut out a social life almost entirely. My kids get so angry and sad when they want to do things or go places that I can’t take them. That is what I hate most. I do hate the way people ‘preach’ to me about what I should do or that I can do it ‘if you really want to’.. That I can live with, I can ignore it. What keeps me up nights and wakes me from my dreams is knowing I disappoint my children. It breaks my heart.

I pray to God that soon a cure for you is found. I know others with Lupus, and it’s a brutal and evil condition. I pray you have a lot more good days, and for longer periods of time. 🙂 As for me, I will sit here and wait for the day I am either paralyzed or severely crippled. Maybe I’ll get lucky too. Maybe they’ll stumble on a cure for both of our problems.

If you ever need another person to chat to, look me up. I’m a great listener. And I don’t give unsolicited advice.. 🙂

With great respect and thanks (for sharing your story with us)

Carrie LeMire
[email protected]

This made me tear up. It’s so hard, even when those around you try to be understanding.

You express these things we all feel so well. Thank you for sharing with us.

I think I identified most with the comment about hating that your husband’s family may think he made a bad choice. (Of course he didn’t! But I understand feeling that way.) My inlaws are very nice people, but I’ve never been their “kind” of folk. Since I got sick three years ago, my MIL acts more and more like my husband is a martyr for sticking with me. 🙁

This is a great blog. Thank you so much to all. I relate to so many things.

I’ve had fibromyalgia and mixed connective tissue disease for over 20 years. It got much worse at my 21-year job, which I finally left in 2008 at age 55 because the demands were completely depleting any energy I had and people were constantly angry at me for not being able to keep up. I feel blessed to have been able to leave and supplement my reduced pension by working from home at the work I was born to do (translation).

I often think the lack of human companionship and acceptance is even worse than the illness itself. I struggle more than anything with spending most of my time alone, and with the insensitive things people, even friends, say and think. “You are so lucky” for being able to semi-retire is one; I want to ask them whether they would take that choice if it meant they had to be chronically ill and mostly alone for the rest of their lives. “How’s retirement?!” with an excited smile is another.

Here’s another favorite: before I retired, my employer let me work from home for a few months, as an experiment, because I could not function well enough in the office. Being able to work, then lie down, then work, then lie down, etc., I became more productive than ever and always met production targets. But they decided I could not continue because coworkers were envious of the “privilege” I had been given. Since I worked in the international sector, US labor law did not apply, and I would have been too tired to fight for disability protection anyway.

And of course the “we all get tired” thing–in my workplace I heard it all the time. These were people who had known me for over 20 years, as a person with scruples who would tell the truth even when it was difficult, and they still didn’t trust that I really was too sick to do what they wanted.

Being there for so long, however, gave me the perspective to see it was not about me at all. I saw examples of shockingly primitive group behavior: how people shunned a coworker who was dying of cancer; how when another coworker got a wasting disease (tropical sprue) that shrank him to a skeletal state, they complained about the intestinal gas he passed–in his own office or in the men’s room–instead of appreciating that he was coming to work when he could. People can be ignorant and afraid. They are afraid of illness, afraid of death, afraid of people who are different. Those are the small-minded people we don’t need in our lives; I have to try to forgive them and let them be who they are–and yes, it is might hard.

All that said, I am truly grateful for so many things: People who are open-minded enough to really hear us and not judge. The few friends who are willing to socialize with me at my home, which I’ve made very comfortable, since going out is such an issue for me a lot of the time. Sun-protection clothing, gloves, parasol, window tinting, which lengthen a bit the small amount of time I can be outdoors at all during the day. My cats, who don’t care what time I go to bed or get up and are ready to keep me company whenever. The realization that “normal” differs so much from person to person. The wonderful MDs it took me so long to find. The understanding that it is, as someone said, just about impossible for people who are not chronically ill to understand us, and the forgiveness that understanding helps me have (when I can manage it) toward them. Those people who listen and try to understand anyway. The exhaustion that made me give up trying to meet others’ expectations and accept my life the way it is, rest into it, truly make peace with it, and make the best of the blessings I do have–and I believe they are many. I do believe we all have different blessings to enjoy and crosses to bear, and that includes “us” as well as “them.”

Thanks everybody!

Ambivalence… that is our lives… our symptoms and spoon supply is in constant flux so we don’t get a new base line to which we can happily or reluctantly adjust.

We don’t want others deciding we have limitations or can’t do xyz, but we also struggle to accept the reality that if we request accomodations it will allow us to get quite a bit done well, rather than a few things at great personal cost.

We ought to able to celebrate our better days but instead they are seen as indicators that we are really not that sick and are used to deny or remove social security benefits etc and at times, even make us spoonies doubt the severity and genuiness of our condition (rolls eyes).

If WE struggle to understand ourselves it is no suprise those around us struggle too. Oh and while the ‘me too’s and ‘I am in agony’s and the ‘we all get tired’ and ‘it’s just getting older’s are very annoying and wide of the mark, in our better moments, we understand that ‘the worst pain I have ever known’, the greatest shock’, ‘biggest loss’ is just that, to whomever it is happening… even if we know WE are awesom and they in comparison are wusses : ) Take care

This is so true for many of us Spoonies. Today, for instance, I am trying to decide if I should go out to dinner with friends this evening, not sure if I will be pain-free enough and have enough energy to manage an entire evening. They see what they want to see, and have no idea what lies beneath the surface. I’ve sent them copies of the Spoon Theory to try and explain, but even then they often don’t get it. They keep thinking that I will get over this someday soon – how I wish that were true, but I know it’s far from realistic. I don’t like to whine but today is not a good day. How I wish I was living with only a cold rather than the myriad of health problems I must cope with 24/7. 🙁

Christine, among all your qualities, I admire your honesty. You show yourself to your readers without a mask. It is admirable and very helpful. By reading your articles and the comments left by the readers, I feel less alone.
It is true that sometimes we have to act healthy. I find that, with my fibromyalgia, I do have to, mostly for myself. I wish « normal » people understood what I am going through… but I don’t see how they could. Having pain all over and chronique fatigue all the time isn’t easy to imagine. I try to educate in my milieu. Little by little, people learn more about fibro and even if they can’t « understand », they are « understanding ».
And to those « dyyyyiiing » of a cold… They probably don’t have the inner strenght that we « spoonies » have.
Thank you Christine, for this website and everything in it!

Thank you, Thank you Christine. You have put in words once again the way I feel and I know so many others feel. As I was reading your words, I was saying out loud YES, you are so right. Having to fight everyday with Lupus, MS and Fibro is like the unending story. It just keeps on going. I feel I always have to defend the way I feel. I can explain till I am blue in the face, but just like you said they truly don’t listen. There is always that blank look and you know, all the things you just said are for nothing. Thank you again for your words and your website is number one on my list. 🙂

Once again you have found a way to put “our” feelings into words. Thank you for taking the time to do this for us while you fight the same battle everyday. You are truly an amazing person!

Bravo!!!!!!!!

thank you so much for this blog. I feel exactly the same way on every situation you explained. I was recently diagonosed within the last 8 months and i’m struggling on who to tell and not tell and when to show i’m in pain and when i’m not. i loved your interpretation and can relate to it 100%. thank you soo much for sharing, it makes me feel like i’m not alone!

For a bloke (with lupus) to read this and wish that he could get away with lip-gloss and foundation, a bit of eye-(un)shadow is something that only a spoonie could truly understand.

With what I’m going through at work at the moment I’m having to fight everyday. Fight to get up, fight getting to work, fight to actually do some work and on top of all that I’m having to fight against discrimination, against unfair policies, against them working it to get rid of me. And it’s only making me worse.

And at the same time no one sees it. Because I don’t look sick and I don’t act sick.

Yet again, you’ve hit the nail on the head!

Thank you. Truthful and raw. This post is true and I live it everyday. Thank you.

Thanks for writing that Christine. It really touched home. I’ve said for a long time that I’m a great actress when I’m out. I wish I could say that to people sometimes when they tell me how good I look, or how I SEEM to be feeling so well. But somehow I think responding, ‘Yeah, I’m a GREAT actress’, would just sink like a ton of bricks and make other people feel bad, which in turn would make ME feel bad. So I’ll just say it to you guys, who understand what I mean 🙂

I have had Lupus for 27 years and I found this website when I was on a 3-week LOA to see if it helped (wrong dr – drugs made worse!). I was so excited! If I had a nickel for every time I’ve heard “But You Don’t Look Sick”, I could retire in luxury! Thank you so much for having this site. I really have no one except Mother and Grandma, who are both in heaven, that really understands what I am going through. There are more now than there used to be who really try and I appreciate that. But it is a lonely place to be. My help comes from the Lord – He is my Joy, Hope, Savior, Friend, Provider – and He directs my steps, inch by inch. But, it really does help to have earthly people, too, who can understand in those times when you feel so very alone in what you are going through. I am also a 6 1/2 year breast cancer survivor and the chemo sent my Lupus into overdrive, but God is good and I really do trust in Him. Thanks again for this site and for sharing from your heart. When I first sent out the Spoons story, I had a close friend who said that she finally understood why I didn’t go out to eat with them – I never knew she didn’t! So, thank you again.

LOVE LOVE LOVE IT!!!!!
I feel like you and I are friends already……..lol
Seriously I can totally relate to most everything you are talking about. I have rheumatoid arthritis and was diagnosed 3 years ago. I try really hard to keep myself looking like I always have and dont like strangers knowing that I am sick. Of course my family and friends know but if they had any idea the extent of what goes along on a daily basis they would quit saying I know exactly how you feel….or I have that too.grrrrrrrr I want to scream liar! You may have regular arthritis but it takes several blood test to determine RA . I literally can feel my hands twisting and it hurts like Hell.Thanks for pouring your soul out and sharing it with us. I enjoyed reading and relating to it and to you.

thats my life n a nutshell. i’m that girl that everyone knows my name and loves to be around, but at the same time those people my “friends” have no idea who i am or what im about. im cool calm and calculated. i “overdue” on a daily basis to live n the “healthy” world and the only people that i allow n is my husband who pretends its not there and my 3 year old that doesnt really understand. how does one thats known for her strength and laughter combine 2 worlds? i’ve only been broken for a few years so i havent been dealing with it as long as alot of u but i would have to say my wall is full of oscars already and im ready to retire.

Another great article that describes exactly how I feel but cannot put into words for myself.

I LOVE how honest this is! BRAVO!!!! This isn’t an article for being “politically correct” when writing from the heart.

Seriously???………….really??

“I thought some of it was not helpful to our psyches.” quote

Obviously, someone banged up their “psyche” from being extremely self-righteous.

I don’t meet many Lupies, Fibromites, Lymies, etc. that are that critical of someone being honest about how they feel. Mainly I hear things such as, “I know exactly how you feel”, & Don’t you hate it when…” these are the things said to most of us with our invisible illness’s.

BRAVO again for a well written honest article, Christine you have done it again!!! Lupies unite! Thanks for saying what MOST of us think.

Your web site it great!!!!!

~Niki~

Of course I understand and relate to much of what is written above, but I thought some of it was not helpful to our psyches. Other people have the right and should not feel ashamed of complaining about their colds, headaches, etc. Illness and its accompanying symptoms are relative to the individual feeling them. We should be understanding of others if we would like others to be understanding of our situations. I especially disliked the usage of the word “hate” to describe feelings targeted toward people with more minor illnesses than we with FM/CFS.

I understand that it was written to help us vent a bit, which we all need from time to time, but I like to believe that most of us do this in a way that is not overly negative.