I have a sort-of, probably-as-diagnosed-as-it’s-ever-going-to-get problem with my nervous system down my right side. I’ve had to explain to people that nervous means the nerves running throughout my body because they didn’t understand why I should feel nervous *sigh*
As ever there are days when I can do most things, and class myself as ‘fine so long as I don’t do anything stupid’ to days where I wake up, and my arm/shoulder and/or leg won’t, which makes getting out of bed actually impossible, as it’s hard to move a numb limb.
I’ve been glared at, and accused if faking it all because one day I could carry books, and the next I was asking people if they could lift them off the shelf for me (because I’d done too much the day before).
I get the weight one, and I’m the first to admit that I’ve put on a bit of weight in the last 5 years. But when your doctor’s words are “it could be a slipped disk in your next. Avoid all physical activity as it could shift again and do more damage” you tend to stop playing the four sports you enjoyed.
I will never forget a different G.P. telling me that he didn’t know what would happen next, and could I pop by about once a year to let him know? Yeah, sure, thanks, although I’m pretty sure you’re supposed to be informing me, not the other way around.
I’ve since learnt I’ll probably need an operation in the future. I’ve decided to look into it when the chance of me becoming permanently paralyser are less than 50%.
One final thing, and this may sound stupid, but I learnt more about
my disability from two medical students (one’s a very good friend) asking questions and talking to each other about me whilst I was listening than I ever got in 4 years of hospital and doctor visits. I even got apologies for referring to me as if I wasn’t there. Seriously, see if you can give it a try, as you can also see how they got to their conclusions, and they could bring up things to mention next time you have to visit a doctor.
Best of luck to everyone here.

Kathryn:
Your post was posted, and I think the reason Google was in the original post was a “duh, of course I have. Do you think I just learned about the Internet yesterday or what?”

My favorite? “You’re too skinny. Eat more cheeseburgers” (pizza, icecream, etc….)

Thanks for that advice – I’m sure that will help my atrophied muscles get bigger, stronger, and make my heart healthier!

I recently went to psychiatrist doctor for my CFS/fibro. Could i really expect any more than “I don’t know why your doctor has labelled you with this illness. Now do some graded activity where you slowly increase what you do each day and you WILL notice an improvement in 6 weeks”
Also “You DO realise that fibro is just a word right? You do know what it means? Its simply unexplained aches and pains”.

Also by my mother some time ago “You should move out and live on your own. Once you realise you have a house to keep etc you will work harder because you HAVE TO and not feel so bad”

Oh, yes. I can definitely relate to some of the things posted here. When I told my boss that I had RA and possibly lupus, he asked me to promise to check out acupuncture – ok boss, I’ll get right on that. *grin* That one didn’t really get me mad because I knew that he was just worried and trying to be supportive. A couple of family members of mine really like to razz me about not keeping my apartment clean and I really wish that I could explain that by the time I get off of work most days I don’t have many spoons left. Most of the time, I don’t even feel like cooking – and if I do, that creates dishes which I then don’t feel like washing. My all time favorite ‘sick joke’ though came with my first diagnosis of Ehlers Danlos Syndrome. For those who are unfamiliar with the condition, it means that we don’t manufacture collagen correctly due to a genetic defect. This, in my case, leads to unstable joints that sublux and dislocate, and stretchy skin. I got the diagnosis (I think) when I was 16 years old. I was still reeling from it when I had an oh so interesting conversation with two of my family members. One of them said to me (because I’m so flexible), that I should join the circus. The other, who shall also remain nameless, looked at the first and asked, “But what would her name be?” (As in what would I be called for my sideshow act). I really couldn’t believe them. But, my response to this day makes me crack up. I had developed, by this time, a very sarcastic sense of humor. So I paused, turned to them and said drily, “Rubbermaid”. I love it when I can think of something on the spot like that. No worries though. Overall, I have a good support system – and part of that is this site. Cheers and spoons to all of you!

Ablies and healthies do seem to suffer from moronism. Not all of course!
I’ve had ‘You don’t look deaf’.
Yeah..right.
Calling me on my mobile. Sending me a video without subtitles.
The worst bullying I have for M.E though. I get dizzy and a lot of tinnitus with the degenerative hearing loss. I’m now deaf with sound sensitivity. Like sirens. They make me feel sick and wobbly if my hearing aids are on. With M.E is the fatigue and insomnia. Anyway,I unfriended an ex friend on FB,she wasn’t a very good friend and after what she wrote I now understand why she left me standing (falling) when I felt woozy the day after an op and general.
She sent this through her sister’s account.
“I don’t care! Don’t give 2 shits. The truth hurts I know my love. People like u lie to claim benefits and then abuse the benefits system. People like my Craig who pay high taxes as a result of it. That’s why this country is in a state!!!!!! Do u think I really give a shit that you unfriended me?? Everyone you meet unfriends you anyway. Stop being a HYPOCRITE!!!!!! If your so ill why u always on Facebook shouldn’t u be resting??? TYPICAL”
Does she take top spot as the most insensitive and the biggest moron?

Thanks so much for posting this!!! I have scoliosis and people have a hard time believing that a “wonky spine” can have such a huge impact on my life.
But, it’s important to keep laughing, especially at people who are well-meaning/caring in such an ignorant way that you’re not sure if you want to pat them on the head or choke them!!
Thank you again, Mary-Beth 🙂

My son (3 at the time of this incident, 5 now) has moderate to severe autism and with it, for him, comes an eating disorder. Because of texture issues, he will not eat. I heard a lady speaking to my daughter at a yard sale we were at. They lady was asking my daughter if she had any sisters or brothers that could wear any of the clothing she had. My daughter (8) said she had a brother who was three. The lady held up some pants and ask my daughter if her brother would like them. My daughter replied, “Well, those are kind of big for my brother. He has autism and he won’t eat so he is small.” The lady looked at me so sympathetically and said, “Really? Are you gonna keep him?” I looked at her, completely shocked, and replied, “Well, I thought of giving him back but I am just not sure where to trade him in at.”

My son is the light of our lives and the sympathy looks drive me crazy. I am lucky to have him, as are his siblings. He is a delight and a blessing! We cherish every moment! Even the tough ones. As he progresses and learns new things, we look back and remember the tougher times. We are so proud of him and thankful for every new thing he learns.

Love this site. I had many laughs reading everything contributed! Thanks to you all!

I am currently a single mom of two young boys. I was pregnant for my 10 yr old when I worked at a school and was exposed to a chemical that has left us both with neurological and other issues. For 10 years I have heard my ex, family and some friends say the stupidest things. They don’t see the illness so I am making it up and going to dr to dr till I get the diagnosis I want. Then the husband changes, becomes violent, I develop PTSD and shortly after Lupus. Recently my “nurse” sister actually said to me in a condescending way, “Daniele how do you expect to function in this world. There are scented products and chemicals all over. You just need to get over it!” And my other sister said to me last week, “You being sick all the time is just so frustrating”. Oh really you should try being ME! Try taking care of yourself, two children (one with tons of health/behavior issues), and every day stuff. I know they love me, but WOW! Think before you talk. And by the way, apparently me moving 3,000 miles away to a warm dry state (to better my health) is me “breaking up the family”. Now I can’t have the “family rocking chair” that was given to me when my first child was born. I can’t take it with me!!!!! How petty. OK- off my kick- thanks for listening.
I do want to say, because I can’t take regular medicine (because of the chemical allergies) I have found much relief in the natural world- especially acupuncture, chiropractic, restorative (very mild) yoga, energy work, and currently looking into some supplements.
LOVE the spoon theory!!!!! Sent it to many and hope they understand me, my son, and our life a bit more.
Namaste and peace to you all

A lot of people think I’m just mentally disabled or disfigured or something when they first meet me so they usually treat me condescendingly so I would use my extremely large vocabulary against them & they would be like 0.0
hehehe! That’s why you don’t judge a book by it’s cover.

I have friends and family with illness that you can’t “see”. Even though healthy people don’t understand exactly what you feel like, it doesn’t mean they don’t care. No one want’s to have someone they love suffer. It breaks my heart to know my best friend, who is my age, is now at home on disability,though I’m so glad she won that one, instead of out working and having fun like she used to. I can never truly know what it is like for her but I can listen and joke with her. If we say something that sounds really stupid to you, please give us some slack too. We’re just trying our best. To the rude people that offer such “sage advise” I would like to smack them also. I’ve seen how hurtful that can be. We, healthy and sick, need to educate others as to how these silent sicknesses affect peoples lives. I wish you all the best(whatever that will be today). I respect the drive you have to live, really live, no matter the obstacles you face. I wish you all more good days than bad 🙂

This is just what I need right now & @ Briony, Clinical Depression is serious & debilitating. I know because I have it along with the Fibromyalgia. My physical condition isn’t what got me my Home Care, it was the depression. I wasn’t flat on my back, couldn’t get out of bed ill, so they didn’t care. Thank you. I am so grateful I discovered this website!

Hi, I came to this website to re-read the spoon theory. Although it took 16 years to get a correct diagnosis, I have spent the past 4.5 years having literally hundreds of tests, a couple dozen hospitalizations, 4 brain surgeries, an open abdominal surgery with an 18″ incision, brain radiation, total removal of my pituitary, both adrenals and have radiation damage to my hypothalamus resulting in a few to several fevers per day. It has been an epic battle to stay alive.

I accidentally clicked onto this article. It is not my intention to ruffle feathers, but I have to point out that there are some of us who DID have to google our symptoms, and go in to our long-time doctors with the search results and journal articles to ask to be tested for Cushing’s Disease, which was my foe.

I know it was said tongue-in-cheek. But why make fun of people who have rare diseases who turned to google in desperation for an answer to “why am I so sick?” In fact, with such a complicated disease, which is caused by a hormone-secreting pituitary tumor resulting in over-production of the steroid cortisol, it is almost imperative to have the resources of the internet to survive. I am not the only one who had to sacrifice my entire endocrine system in order to survive. Although I no longer have Cushing’s Disease, I have Addison’s because I have no adrenal glands, and I am panhypopituitary, which means that I must carefully replace most of the life-sustaining hormones made by the pituitary, which I no longer have.

So thank you GOD for google, which helped my primary care doctor, first endocrinologist and me to understand how important it was to get to a specialist at a large, teaching hospital pituitary center. More importantly, google-my illness helped me to understand the difficult choices I had to make as I gave up each body part in exchange for my life. Finally, google led me to a great support group online — and to this website! How is google a bad thing in the context of an illness, especially a rarely-diagnosed and fatal one?

It is not my intention to offend anyone here. I just felt the need to comment on what was intended as a joke, but kind of hurt this rare-disease gal to read, as if I did something wrong or manufactured my illness by becoming informed about it.

Thank you for listening to me, and please accept these words in a spirit of friendship and understanding. Because, like you, I am (now) living with several invisible diseases as a result of the surgical and radiosurgical treatments I had to endure to beat Cushing’s.

Best regards,
Kathryn

I know that having clinical depression may not be as serious as chronic pain diseases… but if I hear someone tell me one more time “that it’s all in your head” I may just scream, as yes it is all in my head and I have the MRI scans to prove it
luckily my other half understands when it’s the depression talking and not me, and has never told me it’s all in my head
thanks for making me smile Amy-Beth 🙂

This would all be so funny, if it wasn’t so sad and pathetic on the part of people delivering these bright ideas. I know that hearing about my pain wears on the people in my life, so I turn to the web and support groups. I know that I will find an empathetic ear and usually a giggle or two, with very little judgment – from total strangers.

The biggest insults come from those closest to us, it seems…comments about how much research we do about our conditions and that we’re becoming hypochondriacs. Or biting comments about us taking pain medication that we need to get up and go to work. I’m over it and crossing them off the list, for the time being.

And I love the Mt. Dew comment above – if I never have to hear my spouse call diet soda poison again, it will be too soon! Oh yeah, that’s surely what caused my spinal injury – Coke Zero is so evil! I knew the soft drink industry had it out for me – I’m not a hypochondriac after all!!! ; )

“You should eat light, lose weight and take long walks. That’ll straighten it out. Maybe try yoga or (insert exercise program tried and abandoned by advice pusher years ago).

Never mind that I will wind up sleeping 20 hours a day if I don’t get in enough calories to function, 30 lbs of it is scoliotic bone density and any exercises I’ve ever tried or been forced to endure have caused serious injury in short order, usually in one session but I’ll keep stubbornly trying for days till I can’t get out of bed. Been there, done that and burned the T-shirt.

Best advice I ever got though. “If your back hurts, stop what you’re doing even if you think it’s so easy anyone should be able to do it. Exercising when your back hurts is a recipe for permanent back trouble even in someone healthy.” Bless ’em, I hear that about one in ten times and sigh with relief.

Peoples comments(especially family members) used to hurt my feelings and stress me out, after years of this, some of the people in my family started having some of the same symptoms that I have. I want to say, “SEE” it sucks doesn’t it, but I just sit back, be quite and smile just a little.

I have PTSD. When I explained my new diagnosis to my family they scoffed and said it’s only for veterans..um, sorry? 😀

Fantastic list,

My favs have always been

oh you have muscle wasting you should do more exercise.

And the other, oh is that all I thought you had cancer or something!

Yep not serious unless its the big C

Wow! I have no cronic illness, but I have many friends with CP. One of them had someone come up to her as she was heading into the class we share. The lady asked her if she was sure she was going to the right place. She came into the room so angry her usually fair complexion was red. Just because someone’s brains don’t work doesn’t mean they have a mental problem too! How stupid people can be! I told her she should have run the women over in her power chair.
I take my hat off to all of you! fight the good fight and know even though the world is full of a**holes, I still love you! 😀

We have to keep our sense of humor or go stark raving mad!
Some of the things people say are downright bizarre! One person I know who is a jogger suggested that running would help cure my Rheumatoid Arthritis. She said run every day and build up to 10 miles. She may not be aware that I have to use a chair inside my shower! Getting out of bed some days is as exhausting as running 10 miles! People are so ignorant of the facts. You have to laugh or you would end up crying.

AMY-BETH- WOW! I THOUGHT THE PEOPLE I LIVE NEAR WERE STUPID! GUESS I JUST NEED TO TAKE NOTES FROM YOUR POST, AND START USING THEM! I JUST KNOW THE PEOPLE I WOULD LIKE TO BRING THESE UP TO, TOO! KEEP YOUR CHIN UP, GIRL! MULTIPLE SPOONS TO YOU!

Love it! i swear i crack sick jokes all the time. I think it is hilarious how uncomfortable non-sick people get when the sick girl makes a joke about being sick.
I must admitt my favorite is the “well you look good for being a disabled person” like what the hell does a disabled person look like to you. I love to use “Well you look smart for being a total moron.”

Or when someone asks how you are feeling and you respond “like total crap.” to get the response “well, you look good.”
Im like “that really doesnt make me feel any better or change the fact that i feel like im gonna puke on your face right now “

I’m cringing, relating, and laughing. I have MS along with other obscure things most doctors have to ask me to explain. Pharmacist doesn’t seem to understand that some meds are used as needed like the label says and when I should run out if I am using it as directed and don’t get them refilled I’m doing something wrong. They talk to me like I don’t understand the directions. What does “as needed” mean to you? I don’t like to take more drugs than I already do regularly if I don’t have to! Crazy people! And don’t even get me started on “miracle all natural cures” or getting off the caffiene! I like to be awake and alert on occasion! Besides, my neuro said my daily Mt. Dew intake is ok, and believe me, I let anyone who begs to differ know! It isn’t their business anyway! That’s my biggest thing…who made you God? If you know so much, just cure me already! 🙂

“You know, there are more effective ways to get attention from people.”

Right, I was faking that seizure at work because I wanted attention. Of course. And the loss of bladder control was just good acting.

“You could control it if you really wanted to. Just apply yourself, like I do!”

Thanks, yeah, it’s not that you are better at self control, it’s that you don’t have epilepsy.

And my favourite: “Your behaviour frightened my children. You should stay home if you can’t act normal.”

I was actually told that, I swear. I asked if she planned to pay my bills.