This page is saving me mentally and spiritually. Thank you so much. Much needed the spoon theory made me cry so much cause I have never heard something that could explain what is happening to me. All I can say is thank you I don’t feel so alone anymore

Fibromyalgia, what an obscure diagnosis that is; sort of a catch-all for the aches and pains when the provider just doesn’t know what-the-hell else to call it.  Tests are inconclusive and almost entirely based upon the subjective “descriptions” given by the patient.  And as you said in the first few lines, you are a short, fat, grandmother.  Sorry…but I believe the short and fat is the real problem, and you feel pains quite likely because you ARE fat, and beat the hell outta your joints, and your muscles ache because they are underutilized.  There, I’ve said it, you’ve led a life of gluttony and have a hatred for normal exercise, and your body has rebelled and paid the penalty.  And your own lack of self-esteem has you making excuses, and FM now gives you a name for this fictitious “disease.”  You’ve really got fatassitis and an aversion to exercise…and likely have an aversion to work.  So, you’re on SSDI, or SSI, and on every entitlement program you can get into.  Am I close?  And you feel some guilt over parking in the handicap car spots, hence the lengthy editorial you’ve written.  And yes Virginia, there IS a Santa Clause, because a truckload of shitbirds with even less justification than you are also parking in those slots. 
Yes, it was decades past when Veterans without limbs, and paragplegics would only be seen in those spots.  And then the smokers came out in droves, sucking on their portable oxygen as they made their way into the store to buy more cigarettes.  Then all the other deadbeats “saw the light” on how to scam the system.  So now we have more people parking in slots everyday, and the number of slots has increased dramatically.   All I can add to this is, you’ve all a bunch of blood-sucking parasites, and you should get off your sorry asses and get a grip.  Everybody has aches and pains, every damn one of us.  And with 3 purple hearts I got my fair share of pain!  But I’ll be damned if I’ll get a handicap plate or placard; I still prefer to go to work, earn my pay and not look like a deadbeat like you!

Thank you SO much! Especially the part about allowing yourself to grieve and get angry.. I read into that.. “without guilt!”.
Because, yeah.. I go get sad or angry about all I’ve lost of my life due to becoming disabled, but then I immediately feel guilty for feeling that way – like I have no right to feel that way. After all, there are so many people who are way worse off than I am, children starving in Africa, etc, etc.
And posts like yours remind me that no matter how bad others have it, that does not discount or invalidate how bad it can be for me, and I DO have the right to feel however I feel about it!! And if I say it enough times, and maybe bookmark your post to re-read as needed, I will eventually learn to believe it consistently!
Again, thank you!

I so know this feeling.  I was 22 when I was diagnosed with postpartum cardiomyopathy.  I get all kinds looks especially from retirees when I get out of my car and am parked in the handicap space.  I would love to know what they feel defines having a handicap.

I have Fibromyalgia, Sjogren’s Syndrome and Chronic Mylegenous Leukemia. People don’t believe I am sick, I get tired of hearing “You look great, remission?” Um NO I am on oral chemotherapy until the day I die and not much to help the other issues. Last Christmas I was going grocery shopping with my daughter and I used my handicap placard. A woman stopped her car after seeing me get out and reamed me a new one for parking in a handicap spot. I must say very rarely am I ever speechless but I couldn’t believe someone just assumed that because I “looked” ok that I didn’t feel like a steaming pile of poo, I couldn’t possibly need to park there. I finally opened my mouth and said “Does cancer count?”

I look fine, often wear heals and am smart.  I drive a soft top red car.  I have MS. Some days I am Ok but I do suffer from fatigue so my parking permit makes it possible to go shopping because I always have to judge how much walking (under those awful artificial lights which make me feel ill) I will have to do.  When I’m challenged this is what I say ” You are parking in a disabled spot”, Me ” Yes I know” ” You don’t look disabled,what’s your disability?” Me ‘My disability is that when anyone asks me what my disability is I can turn into a raving mad woman and have been  known to commit murder”…… That’ s usually when I walk off and don’t look back!!!!

thank you so much for this people stare at me when i use the parking place i have lupus

Thank you, thank you, thank you! One of my many symptoms is the inability to come up with the words necessary to describe the most mundane thing… let alone my illness! You have put words to my suffering. Thank you!!!!!!

And oh the looks. But,not from strangers,from your own family!And,the nasty,nasty uncalled for commentary targeted at you,your abilities,and the “why can’t you just do this”! Oh,yes,I’ve been living with my “fake illness” for more than (40) years. Many people tell us(self & spouse) we should write a book that it would make great reading for others to hear about what we’ve gone through,our daily fights,struggles,to keep us going. You cannot imagine what we’ve dealt with,absolute terror at times. I’ve tried writing a book several times,but just can’t get things chronologically organised. Then written done with good grammar. At this moment I have been diagnosed,and am being treated for the following:Four rare cancers,my bladder quit working last year,and also had cancer,we’re hopeful,diabetes ii,lymphedema that recently went from just my legs(severe),to having traveled to my arms,hands and face. Deg. Disc disease,two implants feeding morphine to my brain 24/7! Spinal disc problems,with surgeries,major heart attack w/ triple bypass two years ago,depression,bi-polar,nerve ticks,blind rt. eye,one and a quarter good lung left,filled w/ emphazema and COPD,never mind,my medical problems go on,and on.Neuropathic pain syndrome,a constant struggle,a constant barrage of medications that often don’t help. GERD. Severe sleep apnea,requiring a machine for survival,but get this,the insurance won’t pay for it.Now,that is an entirely whole story all by itself,I tell you. Insurance. And having to go to any new doctor,what a trip is in store for us each time we need to see another specialist.”I see the last time you worked was over 14 years ago,could you tell me why”? Could you have spent just a couple minutes reading my profiles! When I have to repeat this story 3,4 times a day,it’s like beating myself up time and time again! Then they look at you as a problem patient!Be assured,anybody that decides to contact me/us,while we struggle to stay positive,to remain pleasant,to converse nicely,we have had enough. We’re just over-done with each day we make it past.So,please,bend some,ok. Funny,the experts look at us with disbelief on their faces,but our story hasn’t changed one word in all these years,something a liar can’t accomplish! Wishes,and Prayers to you and yours. My email is [email protected],feel free to write. Bye  now,Rodger

I have lymphodema in my legs,spinal stenosis,fibromyalgia,asthma and vasculopathy.I am so very down at the moment.I have a neighbour who calls me names when I am in the garden.Sometimes I need my stick and other days I get by.I cant seem to rally myself round to be more positive and feel so alone even though I have a good husband and 2 grown up children

Oh My Gosh!! I read this and just say Yes yes Yes. Somebody else feels like this too.
Yes it is possible to be “Too tired” to watch TV. Yes juast walking out the door can be “too much”” on any given day. It really makes me feel better about this stupid mess they call Fibro. It helps to know that I am not alone in the world with this fight….

I know exactly how you feel.It is even worse when you are 44 years old .They look me up and down I am under weight because of my pain medication and the glares I receive are crazy.

i have learned to ignore them and remember I have proved to the only people I have to the Registry of motor vehicles!!!

I can totally relate to this article (I have a similar disease).  This was so well written.  I think that finding someone who will listen without judging is key.  Your article should be in the Arthritis Today magazine put out by the Arthritis Foundation. 

Hello, I am hoping someone can help me. I have fibromyalgia, osteoporosis in my back, an artifical left leg and to top it off an underactive thyroid gland! my family and I are planning our first trip to Disneyworld and Universal in July this year. I have two children who are eager to try out some of the rides and although my condition won’t allow me to go on many rides I will want to try and have some fun. I’m really worried about the queuing system, I’ve read that Universal is particularly harsh and doesn’t allow for disabled guests to gain priority boarding. I don’t want to push in front of people it’s just that three hours in one of the parks will wipe me out for the day and judging by the reports I’ll not get on many rides in that time. I will be in my wheelchair but sitting for such long periods is excrutiating so not an option either. Can anyone give ne some advice please, maybe I need to call Disney and Universal direct?
Thank You.

I’m 22 years old. I have a congenital heart disease and a lung that doesn’t work too well. This gives me horrible difficulties with breathing and getting around. I can’t even take the bus or train as I risk the possibilty of having to walk up hills and stairs (stairs and hills will pretty much destroy me). To top it off, I’m also dyslexic and am often patronised when I tell others what I’d like to do with my life.

I’ve had people put me down all my life. I really wanted to do drama at college and the woman tried very hard to persuade me not to do it because she “didn’t want to set me up for failure”, despite the fact that she didn’t know the full facts of my disability. She even told me I wouldn’t get into university. Well, I did a music course instead and passed with top grades. Now I’m studying drama at my first choice of university. When I get tired, I just sit out and take notes. It’s not a big deal.

It doesn’t stop there. I worked at a cinema to make a little money for university. It exausted me!! So, I took things down to my own pace to make it doable. I hadn’t any problems with the majority of my customers, but this one woman came in and got in my queue for a film that was already sold out. Nevertheless, she assumed otherwise and complained that it was cause I was working too slow to the manager that she didn’t get to take her kids to the film she wanted to see. I don’t know why, if she thought I was too slow that she didn’t get into one of the other faster moving queues… Anyway, the manager informed her of my disability and she said “a person like that shouldn’t be working in this industry”.

Quite clearly, I’m disabled enough for these people to not want me to do certain things with my life. However, I have a disabled badge, which allows me to park up close, but because I look “normal” I get glares, even from wheelchair users. Even yesterday I got stopped by someone, who didn’t even check to see if there was a badge in the car, and he asked “you’re not disabled are you?” Like I’m the worst human being alive.

I’m sad because there appears to be a no win with this. I try to act normal and people put me down, I act disabled and people put me down.

It makes me happy to see I’m not alone though. I just don’t know how much of this I can take.

Yep, same problems as well!!
I’m 32, but with my hair up, I look like I’m in my 20’s. I’ve had 2 lower back surgeries, in which both have failed, among many, many other issues with my lower back. All of it has left me in constant muscle spasms, arthritis, stenosis, ddd, facet joints collapsing on each other and in chronic pain. My first surgery happened when I was 22. I have worked full time for as long as I could until I couldn’t move any further. Every day is a struggle, some better than others. I walk with a cane, although my doctor wants me to walk with a walker b/c I fall down all the time for no reason. I need a fusion, but surgeons say I’m too young to have it done, etc. So, I wait.

Not only do I get glares, I get told I’m too young for my problems. Like I’m making them up *sigh*. I didn’t know disabilities had an age limitation….seriously!
I was pulling into a handicapped parking spot (I have a handicapped placard) and a cop happened to driving by. He actually stopped his vehicle in front of mine in the parking lot and watched me. It takes me forever to get situated and get the placard on the mirror sometimes. I finally got the placard on the mirror and he drove off. I couldn’t help stare him down as I got everything in it’s place and I got out of my car with my cane.

But I don’t look sick, so I must be okay. Right? I’ve had my cane fall, pretty much on the feet of a man who pretended he didn’t see it. I don’t expect people to wait on me hand and foot or even give me special exceptions. But I can tell you, for as much pain I am in, if someone’s cane fell down in front of me, I would bend over and pick it up. I don’t understand where people’s head’s are at anymore and how rude they are. I live by the golden rule and I guess my expectations of others are the same, but it’s a cruel world out there. I spend most of my time at home so I don’t have to deal with these ignorant people.

I have CFS/ME very severe…. Was bitten by an insect that poisoned my body in 2001. Did not get a diagnosis until early 2006. I do not tell people that I have M.E. any more I just say I was poisoned by an insect bite and it has affected my central nervous system which is true…… People just don’t understand because they are fit and healthy. Housebound 90% of the time and bedridden 70% of the time.
When i do manage a very short trip to macdonalds for a latte… My own special treat, I feel as though I have achieved a great deal just for the hour or so. More often i go through the drive through as i am to weak to walk from the disabled space. I have driven less than a mile with one eye shut as i have double vision almost constantly.
I also have to wear dark glasses because of the sensitivity to light, people do look at me strange when its poring with rain and almost dark and i’m wearing sunglasses. Walking is a big problem because my muscle energy function is severely impaired. So i now have a travel mobility scooter that goes in the boot of the car….what a god send…changed my life. Get more funny looks on that from folk than parking in a disabled bay! But using it in the big supermarkets or stores is great as the staff are so friendly and helpful and they always pack my shopping for me. Going around a big store is very confusing for me because my brain is very slow to take in all the information so i usually get my shopping delivered another brilliant idea from asda and tesco!

I’m 47 and have Fibro and Ranuard syndrome and I can’t remember ever feeling ‘well’!
I HAVEN’T got a parking permit because the doctor I approached about getting one said that it would be detrimental to me as ‘the exercise will be good for you’!
Needless to say, I now have a new doctor, and some days when i’m really bad I think I should get a permit. Since my bad days seem to be out-numbering my good days, i think I shall be visiting him very soon.
And any disparaging looks I get (which I sometimes get when I have to stop walking for a few minutes to gather some energy) will be returned with a request to give the looker a full and in-depth account of my illness!

I am a 34 year old female with CVID, RA and associated complications. By no means, do I look handicapped. I have had a permanent handicapped parking permit for over 10 years and only use it on bad days. I have experienced the ignorance of people putting rude notes on my vehicle, an old man trying to beat me with his cane thinking I shouldn’t be in the parking spot, my brother almost knocking someone on their behind because of insults I won’t repeat… and the icing on the cake was someone actually calling the police to report me. I tried not to smile as the officer calmly told the jerk that called that, #1 don’t judge. #2. not that it’s any of their business, but I do am disabled. #3 that they should be ashamed of themselves and they may possibly be charged with abuse of the 911 system. (my placard was clearly displayed).
Just the other day I got nasty glares when we pulled into the grocery store… I hold my head high and try to laugh off the ignorance. Why are people so mean?

I just had an uneducated, judgmental, jerk leave a post-it on my windshield today that said “Shame!”. And I said to myself, “Yes, yes it is a “SHAME!” that someone can be so cruel and heartless. I am a 35 yr old mother of four who was diagnosed with Multiple Sclerosis when I was 21 yrs. old. I have lost the vision in my left eye, have weakness, fatigue, and dizziness, but those are all “Unseen” by those around me. I am not out of shape and I do like to keep my strength up by exercising, but on days that I have my 5 yr old and my 2 yr old while the older boys (10 & 11) are at school, and my husband is at work, I have to conserve my energy the best I can and park closer to the store. It is very frustrating to feel like I am being judged because I don’t have a noticeable limp or a cane, or a great big sign on my forehead that tells everyone “HEY, DON’T BE MAD THAT I PARK HERE…I HAVE MS!!!!” If you are not the police and my placard is visible, the MIND YOUR OWN BUSINESS!!! I just have to remind myself to pray for the dummies and keep my head up 🙂

I’m a 38 y/o female disabled vet, and I as well have a parking permit. I have multiple spinal issues, nerve damage in my c-spine (twice operated) which has caused partial paralysis in one of my arms, as well as issues in my lower back, SI joint dysfunction, arthritis throughout, severe DDD and stenosis, soft tissue and nerve damage in one leg, and severe arthritis in both knees (no cartilage left in my right knee). I also have FM, CFS and PTSD. I’m single, live alone, so must run most of my errands myself, which is pretty exhausting as you all know and can appreciate, and having the permit is a blessing on any given day.

The other day, it was Christmas Eve, I had to stop at my pharmacy which is located in the grocery store. Of course it was a mad house, and there wasn’t any normal parking spaces available close to the doors that I normally use that are closer to the pharmacy part of the store. So I drove around to where the hc spots were, and there was a car parked in the middle of two spots!!! So I stopped, and made a hand signal to the lady who was in the driver’s seat parked there, waved my hand side to side and held up 2 fingers to show that she was parked in 2 spaces. The lady was well dressed, the car was a caddy/Lincoln town car type of car. She made a face at me, and made an exaggerated mock gesture back at me, copying what I had done. So I rolled down my window, and she rolled her eyes, turned her car on, and rolled her window down and said curtly “What?” So I said “I’m sorry, but the way you’re parked, you’re taking up 2 spots, would you mind just pulling ahead a little so I can park behind you?” and she says “I’m not parked, I’m waiting for someone” LOL yes, not parked, with her car turned off… So, I said, okay, but you’re taking up 2 spots, would you mind pulling ahead so I can park behind you? And she practically shrieks “well this is a handicapped spot anyways!!” And I grab my pass and said yes, I know! So she rolls her eyes again, sighs very loudly, shakes her head and actually punches the gas and pulls ahead and moves.

So I park in the back spot, and she moves back and parks beside the two spots where lines are painted to mark “No Parking”. I waited, to thank her for moving, she rolls her window down, and I say “I just wanted to thank you for moving, you were just parked in 2 spots that’s all” and she yells at me “I wasn’t PARKED I was WAITING, but I”m so glad that YOU got YOUR parking spot!!” omg…

At that point I had enough of her rudeness, especially at christmas time, and I was in incredible pain myself, so I said “Okay, so while you were “waiting” in a stopped position with your car turned off, you were taking up two parking spaces, so thank you for moving so that myself and one other person can actually use them.” Now, as she had squealed off, I noticed the veteran’s license plate on their car, so I also had to add “And it might behoove you to not be so rude to people as you don’t know who you’re speaking to… Please pass on to your husband that a younger disabled veteran wishes him a very merry christmas and all the best in the new year.” Her mouth dropped to the floor, lol. I couldn’t help myself, but she really was rude 🙂

When I came out a few minutes later after getting my meds, there was another care parked in the front spot. She had moved from the driver’s seat, and was slouched down in the passenger’s seat with her hand covering her face, like she was hiding. I had to wonder what she had done, if someone else had said something to her, and what had happened to make her so miserable… Whatever happened to the christmas spirit, peace on earth and good will towards man?

As for getting looks from people, I don’t generally pay attention to that, as I heard the horror stories from others long before I got one. I did notice once though, a lady parked beside me gave me the once over three or four times when I pulled up. I am young looking, so I’m sure it does look rather odd, but, once I open the door and people see me struggle to get out of the car, and then my pathetic gait (because most days I’m too stubborn to use my cane, although I rarely go anywhere that doesn’t have carts to use that I can lean on) I’m sure any doubt disappears quickly…

Hi – I am 61 and I have psoriatic arthritis in my elbows, hips, fingers and feet…five titanium screws were put in my right foot three years ago because I had no cartilage…PsA finds cartilage just yummy and “eats it up”. Since the screws joined the party, I have serious pain, numbness, swelling and one of the screws is actually visible under the skin on the top of my foot. I also have osteonecrosis of the spine and “killer” neuropathy in my lower spine and down the backs of my legs. I have a handicapped placard and it literally is a lifesaver. Some days I can’t leave “MY CHAIR”, which is a recliner with zero gravity to relieve pressure points, heat and massage. I have recently given in to using a wheelchair in places like grocery stores, and of course my loving, caring and amazingly patient husband must accompany me. We joke that his second career has become picking up everything I drop. In the end of the day, I am so grateful for the care of my husband, the support of our two adult children and the love I experience from all of my church community. Also, God bless Soc. Sec. disability, which I was so blessed to receive two years ago on the first try. Next stop, Feb. 1, 2012, when I become eligible for Medicare. For all of those folks out there who look at us so judgmentally, I could only wish that they never have more than half the pain level I deal with on a day to day basis without medication. Hang in there, guys!

I am 48 years old female. I have a condition called Chiari Malformation and some days are good for me and some days not so good I enjoy life when I can, with my condition i have sore joints and stifness, I get puffed up hands and feet too, i get headaches, fatigue and vertigo and my eyesight is a bit blurry too some days. I am a mother of 4 children ranging from 28years to 12 years old three not living at home and one at home. I have four grandchildren aged between ten years old to 2 months old. Some days i am full of energy and ready to take on the world and other days i just have to sit at home taking my pain killers and muscle relaxants and just get through day by day. I don’t as yet have a disability parking card but i am sure when i do get it i will appreciate it and yes when i think i can walk a little bit further i will leave the disability parking for someone else too who may need it more than me.

I have back problems with narrowed passages thru which the nerves pass. I *NEVER* know when severe pain might strike. Often I am not out of pain completely. I have a parking pass.

However, I am aware of those *stares*, they are a result of making people aware, so that is good, but a little hard to take. If I see someone looking (and I’m pretty good at spotting it now), I move slower out of the car, maybe even ‘limp’ a step or two. That’s enough to make people avert their eyes. I know that sounds phony, but I just hate people looking at me because I don’t have a broken bone sticking out somewhere.

Who knows if by the time I make it through the door of the store I will be hobbled by pain? Shopping carts are great for leaning on. Mostly I just take someone shopping with me, just in case. On the rare, pain free very good day, I do not park in the handicapped spot – just because I have it, doesn’t mean I abuse it. Thanks for letting me ‘vent’.

Hi – I am a 54 yr old single female and I have peripherial neuropathy, lymphedema and spinal stenosis. I’ve had a handicap placquard in Oklahoma for several years now. This state recently raised the fine for parking in handicap spots to $500 and I don’t hesitate to tell the store manager when someone is without the placquard. There are some days when I can walk half way decent, but most days I don’t and cannot walk very far. Those electric carts have allowed me to actually enjoy shopping. I’m thinking of buying a scooter… anyone have any advice? I heard about one that folds in half and maybe I could get it in and out of my backseat. I also wonder if Medicare would pay for mine??? This past June I finally was awarded disability and am so blessed as I can now use my ‘spoons’ for many other things. But, of course, only a couple extra a day. Just reading these posts is like a soft gentle hug reminding me I am not alone and am grateful to be able to walk – wobbly as I go. So thank you everyone for being here!!!