These are great. I am glad to know that I am not the only one with loving family members that just don’t get it. I have RA and fibro and even my husband thinks I just quit some nights when I don’t want to clean up after supper. I think the hardest part for them to understand is that there are good and bad days with no rhyme or reason for the differences. Thanks for all the insight and humor.

I love it when I get ” Your always sick!!”. I just say “Aren’t you glad you aren’t me????” That usually shuts them up, lol.

I liked it when my aunt who I hadn’t seen for a couple of years came up to me and said ‘Haven’t you put on weight since you’ve been in the wheelchair!’ Thanks, Joyce, I feel tons better hearing that!

@Brendan
“and maybe try Atkins”

OMG my Uncle did this to me once! I was still dx’d with major depression at the time which was later dx’d as bipolar type II. It was my antidepressant at the time that caused massive weight gain and he was always on my case about it. (I was staying with them when I first moved here and was looking for a place and he literally sat me down and lectured me about my weight and diet etc!!! ) The Dr finally changed my meds and the next time I saw him about a year later I had dropped about 80lbs LMAO! He was all like “wow you look great! what have you been doing differently?” Told him they switched my medication and the weight just came off the same way it went on. He was awfully quiet at that point :p

Ha ha so true! We’ve heard a couple of these ourselves, my mother, sister, and I.

– “Maybe if you tried moving around a bit more…”

– “If you’re not sleeping have a word with your doc. I`m sure she`ll have lots of alternative tablets you could try- it really is a shame you having to listen to all that radio instead of sleeping. As you know, statistically rest is the means that cures the most people with M.E..”

(No kidding. Thanks. >_>)

Oh and what was that other one already? Oooh yeah, I remember.

– “Today I learnt a little about Münchausen/ Münchausen syndrome by proxy. *hint hint* Be worth looking up on the internet.”

(Gee, thanks… All the doctors & specialists we’ve seen must have been seriously incompetent to have missed that! :O)

– “Have you had any history of mental illness in your family? If you decide some help in that area would be helpful, I recommend Dr xxx rather than Dr xxx.”

(Wow. That is so helpful. Really. Thanks…)

God these are so great!
The best is ‘Don’t you want to stop taking meds?’ or “You shouldn’t take cortisone i read it is bad and makes you fat!”

Thanks way to make me feel better.

My favourite: “There’s this new stuff; all herbal. Costs a lot but worth a try?”
My turn to say “Thanks, I’ll ask my doctor”.

Then the classic, always said with a head tilt to the side and a quixzzical, concerned look “Don’t you want to get better?”.
Bleurgh

I was diagnosed with Fibromyalgia in 1989 when most physicians would rather write you off as a mental case. Thx. AW for going the distance to diagnose this & help me understand this debilitating disease. Since then, I fell and was diagnosed with RSD. Along with both comes the depression…blah! I simply hate when people say, “I wish I could stay home everyday!” I would gladly trade a day at work for a day at home with this pain and all that goes along with it.
I had someone say, “You just need to push your way thru the pain.” I just want to give them 1 hour in my body and see how much pushing they can do.
Here’s one for ya…”you sure don’t look sick!” It’s a mask I wear. If I showed you just how I felt, it would scare you spitless. Oh by the way, if I showed my true self, would it make you feel better?
I’m a Christian and have heard everything from “you’re not praying right,” “you must not have enough faith,” to “you must have sin in your life.” Did I say they were Christian????? Hhhumm!
Much love and endless spoons to all of you who understand.

@Ella…being a single mom myself with lupus, I know exactly what you mean…..sometimes there just ISN’T anyone else and pain or no pain we HAVE to take care of things on our own.

Huggs

I have just been diagonsed with Fibro after an 8 year battle with chronic pain and a 20 year battle with fatigue, depression and anxiety. Over the years I have lost friends, husbands and family members who believe my symptoms to be “all in my head”. After 2 years with a psych I was happy to inform them it wasn’t!!!HAH!!!
My worse comment came from my own son who said “If you were in as much pain as you say you are, you wouldn’t be able to do the things you do (for them).”
As I am a single mum of 3 boys with no support network and I told him, “Well who else is going to?”

The worse remarks I have had come from my adult son and his new wife of six months.
They both think I am too “unstable” for their company and to be around my dear grandson, which I have had a relationship with for his 10 years of life. Oh, I better go for some help was also mentioned~Yikes!

I have CFIDS for 20 yrs. and now possible MS. I wonder what “stable” is to them dealing with this invisible disease alone?
LOL, I must maintain some uplifting sense of humor so I don’t pull all the hair out of THEIR HEADS!…..lololol

From every primary care provider for the first 6 years of my sobriety;
First they often leave the exam room after telling me they can help and will send me home with enough sample medication to get me started. Upon their return to exam room with bag of packets containing some super drug, “You have perfectly described the symptoms of depression. Here are the instructions to begin taking this anti-depressant and it usually takes about 30 days before you’ll notice any improvement.”
Wait Doc, I’m familiar with depression symptoms and I’m not depressed, I’m sure there is something physical going on and I would like to find out what it is in hopes of treating THAT and feeling better.
Doctor, “There’s nothing to be ashamed of about depression, it is very common and it’s not really what we use to think it to be. Your symptoms are classic depression, just give the pills a try.”
me, I don’t want to try them because I am not depressed and those are powerful drugs. When someone can convince me I am depressed based on the common criteria for diagnosing depression, I will be more than willing to have my depression treated.
—-on and on, general practitioners to nuerologists tried forcing these down my throat while I suffered from sleep apnea to a severe extreme(never heard of it, counted on Doctors), as well as a dying liver due to Hepatitis C that has brought me to advanced cirrhosis and an extremely shortened life span presented on short notice.
In the end, literally, I am grateful for it all because I have spoken just as thoughtlessly to others out of ingorance, nearly enjoyed my arrogance at times when I was so sure I knew something I probably didn’t have a clue about, and so it goes with our human condition.
So it goes, except these experiences have shaped me into a better human being able to love others with abandon and know a compassion deeper than most ordinary, healthy people could ever begin to grasp and that is not boasting, but gratitude I was given the experiences to realize the beauty of these depths.
Most of us have come to realize these things through our suffering invisible illnesses and conditions. I love laughing at the ridiculous things we have all heard, but I always must remind myself ot he gifts our suffering has brought into our lives so that I am able to rejoice instead of being consumed in the isolation and resentments.
Prayers, much love, and countless spoons to all my brothers and sisters here!

I have Trigeminal Neuralgia along with large fiber neuropathy, fibromyalgia and recurrent depression.

I was in pain one day and a nurse asked me if I could possibly have allergies. No, the NCV/blink reflex showed facial nerve response typically found in TN. Never had allergies and allergies are not so painful you wish you were dead.

I think people can’t understand serious, lesser known illness and want simple answers to make them feel comfortable. But if we had cancer or some other well known illness there would be different reactions. I can’t change what I have to make others feel better, if I could, I would have, long ago.

My favorite was from one of my drs who does not believe Fibromyalgia exsist , told me I just needed more hugs. REAllY hugs, I have two kids and I get hugs all of the time doesnt seem to be curing me tho.

I agree Desba. I’m trying to come off all my meds right now. I have lost my gall bladder 2 years ago due to meds eating it up, and now my liver is not happy. I’ve been sick for 20 years, and it does take a toll on you. I also would like to make and sell jewelry, if I could just feel like doing it on a regular basis. I really hate being sick, like all of us do. I hate even more that people don’t take you at your word, when you say you are in pain. I also suffer from Type 2 Diabetes, which with the Fibro I can not get under control.

To all those who say things about stuff you don’t know anything about: all I can say is I hope and pray for you that nothing like this ever affects you, because if it does…….. you will feel the wrath of your own words.

My biggest pet peeve is my mother – a registered nurse who should know better. She hates her job and constantly tells me, “I wish I could stay home all day.” Yes, Mother, I’m thrilled to be 28 years old and crippled to the point that I can’t leave the house without help. And then she complains how unsympathetic I am.

btw: I don’t shun the word “crippled” – it’s an actual English word, and it’s very descriptive, and I’m darn well going to use it if I want! Language is powerful and making up new words because others have hijacked the original ones, weighing them down with horrible layers of accusation and negativity, is a concession we shouldn’t have to make. We need to take back our words.

Earlier tonight a neighbor informed me that she had a bad back, andturned it over to God, and He cured her! That I should do the same thing. I had all the illnesses before I was baptized a while back, they didn’t go away as they probably weren’t imaginary, but what about injuries? Especially my most recent?? Its all there, its all real, on tests and x-rays! My husband used to say “Sue’s got another illness!!!” Funny. Hah. Forgot to laugh.

I was in the ER when a pretty little nurse said, “I think what you need is some yoga and some Cymbolta!” Gee, thanks. I wanted to slap her pretty little face! LOL

@ Melina from June 15th-(or should I just say, “HI MOM”? )and her “Two Cents”.:
No, Wrong! Being called Lazy is NOT worse than These diseases are. The Physical Pain Is far worse. Even the ‘acting’ & SeemingFINE part is worse as It causes more pain. How can you have “vague” symptoms? My RA isnt vague. The Pain isn’t vague, nor the exaustion. The pain of your ‘well-meaning’ remarks to Just DO SOMETHING when steroids, etc killed my thyroid-and i gained 100 lb.s, sure, that hurt- a bit. But not for a MOMENT do I believe that these comments are ‘well meaning” or ‘NOT “Judgmental” as you claim – and admit you make them yourself! ?
Everyone here who is Truly ill knows in their heart that they ARE being judged when folks like you (with your vague symptoms) tell us to Just DO SOmething about ourselves. You are saying: “You make me uncomfortable-get better or go away.” Or, “I am superior”; I have this right to Advise/instruct/chastise You”.
People already understand Illness w/age.. Age is visible and the infirmities that come with it understood. But this is for Invisible Diseases. SO, Assume we don’t want your judgement. Please. Well-meant or not. ‘JUST MY TWO CENTS’

My favorite from a relative: Have you tried getting an exorcism?

…

I have Bipolar 1. I’ll get right on that.

Also: Have you tried meditation?

Sure, I’ll try that once I stop being manic so I can hold still.

wow, all of these comments have really been helpful and supportive for me!!
I have Systemic Lupus, Fibro, Hypothyroid, a Seizure Disorder, Depression from the meds, and other complications from it all. People just don’t get it. Yeah, some do try to be truly sympathetic, but most days I JUST CAN’T DO IT. So back off! No, I’m not being lazy, or using these diagnoses as an excuse to get out of cleaning or cooking for myself! Why would I do that? My family asks me to honestly say how i feel, so i tell them, then they get upset because they say THEY can’t deal with the stress of my illnesses and how my answers make them feel, etc etc.
So i usually just say i’m doing “ok”, and then they say “no, how are you really doing?” You expect me to answer that after how you acted last time?
I just switched to some new Dr’s, and i’m hoping these ones are better than the last. The last one stuck me in a Psychiatric hospital lock-down facility, because she mis-managed my seizure meds and that caused serious depression, etc, and it all went downhill from there. I never had any problems with depression before I started seeing her and she put me on these meds, which didn’t help anyways. ARGH!!!!!

ok. Done venting. Sorry for that!! Wish you all soft beds and more “spoons” 🙂

The one we used to get all the time when my hubby was finally diagnosed with fibromyalgia: Have you tried vitamins?

“Are you sure you’re not imagining it?” And that was my mother. I’m currently labeled as having fibromyalgia, but have been told “huh, I’ve never seen this before….” from countless doctors, heard MS for a while, and am now being tested for Celiac Disease.

I had a boss tell me that she “didn’t want me to use my illness as a crutch.” Thanks. I’ll tell my doctor.

My favorites are “Ugh are you always sick?”, “whatever, you never feel good” and I had a boss that told me, “If you keep a positive attitude and pray to God your Crohn’s Disease will stop flaring”