Well, one reason is because there is more walking inside from store to store…much harder to do if you start out in pain from walking a long distance to the door. There are also benches in the mall, or I can even just sit on my walker if need be. Not a great idea in a parking lot. Oh, and i’m in Canada, and wasn’t asked about how far I can walk, neither was it on the form the doctor filled out for me.

I hope it does!!

That really isn’t for you to decide and it’s not your place to point this out, even if you aren’t trying to be mean. Obviously a person knows their own limitations and when they can and cannot drive. Also this person could be a passenger who still needs the placard. Regardless of intent, this was a rude comment.

From some body that has MS and needs that spot every time because i have to use two forearm crutches all we say is on the days when you feel good don’t use the spots just get that extra exercise, it’s good for you. Just besause you have a permit doesn’t mean you have to use it every time.

“You don’t look disabled!” I was taken aback and my companion was ready
to fight! But I got ahold of myself and said cheerily “Thank you! You
don’t look stupid!”

That has got to be the BEST comeback link ever!

had CFS bad for several years (thankfully it has lessened now), and will still get an occassional severe attack if I do too much. Which leads to my “favorite” stupid suggestion of all time (from my sister-in-law): “You just need to push through it.” WTF?!? (Yeah, I can “push” myself into a 3-day stint in bed, you moron!)

I think there should be a variety of disability parking permits to avoid the hastle. If you need a wheelchair, use the wheelchair logo. If you wear a fake limb or braces to enable you to walk, have something for that. Doing that would stop people freaking out when they see “Wheelchair” on the permit, only to notice you’re not in one!

I just found your blog. My sister and I both have cardiomyopathy. She was diagnosed 16 years ago, I was diagnosed last year. The last two to three years she has had to use one of those scooters in the supermarket. She gets looks because they think she’s just lazy. She has found a way to shut some people up quick. A little old lady about in her 60’s made the comment “I wish I could ride around in one of those”. My sister very politely said “I wish I didn’t have heart failure then I could walk like you”. That shut her up. That lady couldn’t get away from us fast enough.

awesome post! thanks for sharing!

I hear you! Every time I get out of my car when I don’t have my cane or use the little motorized cart, people are always looking in judgment. Honestly, I don’t ever recall doing that to other people. I just assumed that they use handicap spots and/or tools because they need it or someone they are with is in need of it. I am now just ignoring people & doing what I have to do especially since my body dictates what I am able to do for the day. Better to be concerned about & respond to my body than even waste energy and/or time being concerned about what others may think. They don’t feel our pain.

Well said. I was recently diagnosed with RSD.  I live in constant burning pain but that can’t be seen by others.  Not even my mother can see it…just rise above it is what I’m told.

Don’t you think I do?  Every time I get out of bed, put on a pair of pants, everyday things that I used to take for granted.  I can’t work, but I do as much as I can because that is what will keep me alive.My thoughts are with everyone!

I like to give the dirty looks people, dirtier looks. I’m like please say something to me , go ahead make my day, please. Unloading 6 years of pissed off fury would be a great victory. haha..

There was a woman once who snidely asked me while I pushed the handicapped button to open door ” What you can’t open that yourself?” as if I was too lazy to do it. I’m 26 my mom goes pretty much everywhere with me, and she looked as her and told her why. It was kind of amazing I’ve never seen anyone backtrack so fast, apologizing over and over.

I have an incomplete spinal cord injury and cervical dystonia in my neck. To the untrained eye I look normal, maybe a bit stiff. I can’t swing my arms when I walk anymore, and I have a foot that doesn’t bend. Plus all the pain. blegh. A neck that no longer can move. no fun.

We’d all trade in anything to get our lives back. But I have no problem using my disabilities when I see fit, it’s certainly no picnic. That blue placard is one of my few perks.

I also have fibromyalgia and have gone through a lot of pain, fatigue, and mental fog until I found the right medication for me. I had to change doctors because the previous doctor was no help at all. She even refused to sign a request for a handicap tag due to her own ignorance and prejudice. I am doing much better during the day now that I am on Lyrica, but night pains are really disabling and baffling. I use tramadol once a day to control the leg pain I have at night.

Early on last spring, I began to research and write about this illness on my blog. You might want to check it out, since at least some of the information might be helpful. My resources are scientists and doctors who make this their life work, and I include my own experiences, since everyone has her or his own kind of symptoms. I wish all of you better health and more understanding from those around you.

My blog site: http://www.mttop72.wordpress.com.

If you desire to improve your knowledge only keep visiting
this web page and be updated with the latest news update posted here.

First, I apolgize for the lengthy post, but I have a lot to say.

This is in reply to “Jon”–

You sound very bitter, angry and judgmental, and for that I have the utmost sympathy for you. It must be a terrible way to exist.

I’ve been a Registered Nurse for 23 years. I’m ashamed to say that even up until 5 years ago I, too, scoffed at fibromyalgia. Whenever I heard a patient had that ‘diagnosis’ I would say to myself, “Yeah, right.” I bought into the myth that fibromyalgia was a condition that stemmed from neurosis rather than being a “real” illness. The significance of that I will illustrate shortly.

I’m 55 years old and was diagnosed with idiopathic (meaning cause unknown) early onset osteoarthritis at age 40. It started in my hands; I had my right hip replaced two years later when I was 42. At that time I was a single mother holding down a full-time job; I attended school at night (my dream was to become a Nurse Practioner), was single-handedly remodeling a 70+ year old house–including extensive landscaping– and was a leader in my son’s Scout troop. Additionally I walked 3 miles a day, rain or shine. I was described by my friends and family as industrious and a “dynamo.” I continued to work fulltime at my job in a busy clinic right up to the day before the hip surgery because I was so dedicated–I wanted to be certain that my temporary replacement was well trained. I remember going into empty exam rooms during the course of a work day, where no one could see me, to cry when the pain got to be too much. I gritted my teeth and continued my daily walks up to a month before the surgery. Anyone who has had to have a hip replacement knows how difficult that was. I used to think, like many do, that osteoarthritis just meant “aches and pains,” as you put it, Jon, until I had it. Sometimes the pain was so sharp and excruciating it literally took my breath away.

Despite my commitment to my job, I actually lost it after being there 10 years because my recovery from the hip replacement took a few weeks longer than the FMLA was able to protect my job. So much for repayment for my dedication; however, as often happens, I’m now grateful as I moved on to bigger and better things personally and professionally as a result.

Since that time the arthritis has marched on and I now have it in virtually every joint of my body–even in my feet. I often get asked by people whether it is RA rather than OA, but yes, it’s a rapidly progressive form of OA (which I feel certain the medical community will one day prove is at least sometimes also an autoimmune disease). I recently had back surgery for a herniated disk and arthritis in my spine; I also now need a hip replacement on the other side. In addition to the pain that can be horrific, I fall sometimes because the arthritis also makes some of my joints unstable.

Then, a few years ago I started feeling extremely fatigued most days. I would go to work at my job at a call center and by noon I could barely keep my eyes open. I was sleeping and eating well, so I was mystified–I’d always been very energetic and had never had daytime somnolence. For instance, just prior to the onset of the fatigue, I had been congratulated as being one of the top-ten walkers during a campaign to increase exercise amongst a staff of about 250 nurse colleagues. Now, I found myself going home and not being able to do anything but lie down because I was so sleepy and physically drained. It was very upsetting and depressing for me. I felt my body was continuing to betray me and not only did I not know why, there seemed to be nothing I could do about it.

Soon after, I began experiencing total body pain–muscular rather than just the usual joint pain. It varied greatly from day to day and on the worst days I felt like I had worked out very hard the day before and my muscles hadn’t recuperated, but I hadn’t done anything unusual. On those days I found it difficult to even raise my arms or legs, and my posterior flanks and sides were very sore as well. Walking was more of a challenge than ever. Meanwhile, due to my phone conversations about health with patients at work, I gradually started to develop a new respect and appreciation for fibromyalgia. I couldn’t ignore that I was encountering more and more patients diagnosed as such who seemed perfectly reasonable, stable, believable and sincere and whose symptoms followed a fairly predictable pattern. Even so, it took me a couple of years before it occurred to me that I had it myself. That’s when the fatigue, the muscle pain, the scattered exquisitely tender spots on my body (that I had never really thought about before—I just accepted them as “me”—I only knew that if I happened to pressed in certain spots it really hurt) made sense.

Jon, you described fibromyalgia as “obscure,” and I can’t argue with you there. It IS fairly obscure and you’re right, there’s no test for it and the diagnosis is mainly based on subjective symptoms described by the patient. However there are definitive diagnostic criteria. You may or may not know that Multiple Sclerosis is similarly diagnosed. There is no medical test for MS, either; a diagnosis is also made by evaluating subjective symptoms in relation to diagnostic criteria and by systematically eliminating other possible conditions. I feel certain that you wouldn’t argue that MS is very real and can often be debilitating. So is fibromyalgia. Just because an X-ray or lab test is not helpful in the diagnosis, it doesn’t mean a condition is imagined, doesn’t exist or is because a patient is not physically active and/or overweight. Additionally, as others have pointed out, many fibromyalgia sufferers are not overweight. Because obesity is such a pervasive health problem in this country, it stands to reason that many would be, just as many Americans with ANY sort of medical condition are overweight. That doesn’t mean being overweight is necessarily a causative factor.

I read about the “Spoon Theory,” on this website and can relate to that so well, both with the OA and the fibromyalgia (I steadfastly refuse to refer to these conditions as “my” arthritis or “my” fibromyalgia.) They don’t define who I am, but there isn’t a day that passes when I can forget that I suffer from these conditions and have to take my physical status into account prior to virtually anything I undertake. I admit it makes me sad and even angry some days, but as a nurse I try to keep in mind that I have it good compared to so many others out there who have health issues far more debilitating and severe than mine.

I am seriously offended by your “deadbeat” remark. Not everyone who has a chronic pain condition, Jon, wants to get or is on SSI. I have been urged by friends and family for the past year now to file for disability, but I’ve stubbornly resisted and am instead determined to continue working as a RN and contributing to making a difference in people’s lives. Who knows, the nurse who helps you next could very well be a fibromyalgia/chronic pain sufferer—you never know; it could be me. Like the website says, we don’t look sick much of the time.

Like many on this site, I have a handicapped placard. No one can judge from appearances who needs a placard and who doesn’t. A person could have congestive heart failure and be able to walk from the handicapped spot to the store with no apparent difficulty, but if they were required to walk further it might lead to severe shortness of breath and weakness, or worse. I used to feel guilty when I would get dirty looks from people who obviously didn’t think I appeared to be “crippled” enough to warrant having handicapped parking privileges. I stopped feeling that way the day my car was broken into and my placard was stolen. Naively, I asked my son why on earth would someone steal that, of all things? He replied that handicapped placards are sold on the black market for $1000 or more. There are lots of folks out there who use a placard who don’t actually need handicapped parking—it’s merely about convenience. When I shop and all the handicapped spots are taken and I have to park some distance away, I can’t help but wonder if any of those cars belong to someone who bought a placard illegally.

So, Jon, I hope something I’ve said here has impacted your negative opinion of fibromyalgia, but if not, I still feel good about sharing my story here. It helps to know that we aren’t alone.

jon, i do believe that if a person takes care of themselves they will be rewarded later. yes. but, that is not a guarantee. i’ll give you one example.

some time ago a woman and man decided to marry. fine. they also decided not to have children right away. fine. in the meantime she began to have back problems. to make a very long sad story short, she was taken to a gynocologist and the diagnosis was she had problems with her uterus so the decision was a complete hysterectomy. fine. however, her back pain returned. she was taken to an orthopist (sp…bone doctor). diagnosis? yeah…all her life one leg was shorter than the other. you see jon, sometimes things may not or don’t show up until later in life. and that’s what happened to this woman. solution? a special shoe to make up for the lack. now pain gone. but what about their wanting children of their own? impossible! really sad.

this couple led a very active life. they took care of themselves. as a matter of fact, they made sure even more so because they wanted children but decided not to right away.

you see jon, your comment is very selfish and narrow-minded. there are people who took very care of themselves but as it turned out, in the straight definition or looking at things, didn’t even matter. we’re sick. whether persons such as yourself recognize that or not.

now of course to be fair there are some people who has not taken care of themselves. so do you think they should be included too in your comment? really? well my goodness jon make up your mind! which is it? the answer really if you’re so knowlegeable as you try to claim to be, is that it doesn’t matter either way. we all get sick. we all are sick. that’s the reality and not the dream that you’re so trying to get us and others to believe.

I suffer from RA and look completely healthy on the outside. When you tell people why you can’t do things they look at you like you are crazy. Then when you try to explain RA to them, they are like yeah I have arthritis too. Yes arthritis is a symptom of RA but it does not define the disease. I have given up trying to explain it. Thanks for a great article.

So, I am wondering why a BULLY like the veteran on the prior page is even on a website for people living with invisible illness. I guess being a bully is an invisible illness but unlike what we all live with, he has a cure. His cure lies in having empathy for his fellow man, not anger and hatred with preconceived notions. But, I can only find pity for him, as he is lonely and angry. And I have felt that way many times myself. I also honor his service and the pain that he endured (purple hearts aren’t just given out for participation).

I understanding the suffering without suffering myself. Your writing made it possible. It is common for people to give that dirty look when they think you don’t deserve the benefit you are getting but more important in the writing was the narration of your journey. Thank god you have a nice family to understand and adjust. May they always remain so and you have enough strength to write such beautiful, heart touching pieces. Try the books even if they take long time, you should publish.

Your post so struck home with me. I am a young looking 45 with Lupus, and suffered extreme injuries to my lower extremeties in a car accident. I can walk about 200 ft, but then must sit down.

Every time I park my car in the handicap space, and then go into a store only to get on a scooter or wheelchair, I get the nastiest looks. One time, i was going thru wal-mart with my 80 year old grandmother, and she was walking (quite spryly i might add) and I was scooting along. Oh the heads that were shaking at me.

It upsets my family more than me anymore. But the blessing to me is that I never judge anyone, and always remember that each persons pain is their own (physical or emotional), and how they handle is is always the best they know how.

Occasionally however, just for my own amusement, when out in my own wheelchair, I will often stand up to look at something or check out an area where my chair won’t fit. Quite often people’s faces are just shocked that I’ve risen out of the chair and walked, so I like to exclaim “I’m healed….. I can’t believe I can walk”, just to make myself smile! Try it some time… it does feel good when you look at the faces.

Be good to yourselves all. This is my first time here. Think I’ll drop back by soon.

I thought Deborah’s piece on Fibromyalgia was very well written and explained exactly how I feel, especially being looked at as if there is nothing wrong with me even family and friends telling me I should exercise more (I just bite my tongue) drives me mad! I have had a lot of sick leave and have been told that I might have to change my job because I am sitting in the car going to and from work then sitting at a desk all day with no option for moving around as I work in a call centre.  I am taking lyrica but it has never got rid of the pain and painkillers (I’ve tried all types) don’t do anything so I just put up with the pain and keep busy and keep smiling! Thanks Deborah for putting into words exactly how I feel and I wish you the best of luck with your writing! mind yourself and take care!

I too have Fibromyalgia but nowhere as bad as you. I also have a Disability Parkin Permit because of my bad back & muscle problems in 1 leg.
I have Hashi6tos Thyroiditis which Im stij trying to regulate. My GP/Naturopath has told me that there is thought that Fibro is caused by an underlying thyroid condition thats öt being treated. Mine is but not 100% YET!
Get ur thyroid checkf & before you do, look up symptoms of thyroid. Also look up Graves (high) & Hashimoto (low) because these are autoimmune types and antibodies wij show up in a blood test. Good Luck & take care.

Jon, I am very thankful for all the service you done for us while serving this country. But you are very stupid. I am not FAT, I am 5’5″ and only weigh 142 lbs. I have Fibromyalgia and was diagnosed with it 23 yrs. ago and I am only 45 yrs old. I do get SSD & SSI because I am unable to work. I had to chose either go on disability and take care of my home and family or work and have a home that nobody can live in. Because Jon, I can’t do both. Having this condition has made it where I have to chose what is most important to get done and do and what can wait until tomorrow. I have 1 biological daughter and 2 step-daughters (but they are all 3 my daughters) and I have one beautiful grandson. I do have another on the way. But where my grandchild is concerned, if I know he is coming for a visit then I can’t do anything that day just so that I can hold him and hug him and play with him. The spoon theory is correct, we have to decide everyday what is more important then all the other things to do and that is what gets done. Depending on how we are doing at that time is what is getting done. And you know I had a handicapped permit once when I was in my late 20’s and I came out of a store once and found a nasty note on my car. My parents had just showed up at the store and found me bawling holding this note. My dad followed me to that store for the next two weeks to try to catch the stupid son of a bitch that left me that note. By chance do you live in Nebraska? But I let that ass get to me and I never parked in another handicapped spot instead I withstood more pain just because. But I grew up since then and I do not let stupid people like you control what I do or do not do. I have fibromyalgia and I fight pain everyday of my life. I also have alot of other conditions that go along with this disease and I have several different doctors. If you only knew what we go through you would be apologizing to each and everyone of us. No matter what our condition….if we look normal it does not mean that we are not in pain. 

I’ve been challenged so many times by the older generations, glared at & verbally harrassed, saying that ‘don’t you know that these are for disabled people’ – I normally politely show them the badge, but at times I have been so tempted and have pointed out that you don’t have to be old to be disabled!!

I’m in my twenties and a former competitive athlete. I stopped competing at 21 and began coaching. I was in great shape my whole life until age 24, when my chronic pain became so bad that I had to give up the sport I love. Now, just a few years later, I am overweight. I’m not nearly as active as I once was because, well, it’s exhausting to be in pain all the time. Still, I force myself to the gym several times a week. But it’s not enough. Two of the medications I’m on to help control the pain cause weight gain as a side affect, and with my pain I can’t do enough to counteract them. I used to be pretty, and thin, and happy. Now I can’t go a week without crying.

Imagine, Jon, going through the kind of pain that you went through that earned you those purple hearts – imagine going through that pain every day, with no real hope of recovery. Now imagine that, in going through that pain, instead of being hailed as a war hero, people told you to stop being a little pansy and get over it. You would think that someone who’s no stranger to pain would be compassionate for the suffering of another. I hope you find it within yourself to change. Hate, like pain, is toxic.

I am short, but I am NOT fat and I was diagnosed with Fibromyalgia, and I am more then willing to have a different diagnosis. One that will make the pain go away, one that will allow me to play with my children the way my heart wants to. One that will allow me not to fear getting confused and lost while driving my children 1 mile to school. Or get into an accident b/c my muscles can’t handle it.  Or fall down the stairs because my legs give out. This is not a choice, this is not a decision I made. I used to be active. That person is still in my heart, my body will not comply. I used to work 2 jobs and go to school, and found time for a personal life an enjoyable one. I still work I am not collecting any benefits, nobody else is taking care of me or my kids, doing my laundry or doing my job! But I will remind you “I DO IT ALL”, but I pay for this priviledge of being a mom that works everyday.  So I am not sucking anything, I am not a deadbeat. But I do hurt and don’t deserve to go on a page to speak to and learn from others. So if at 5 pm when I  am done working and pick up my 2 kids from school and need to run into the grocery store, and parking in a handicap spots shaves off 15 steps for me so I can feed my kids I will do so without guild. If you don’t understand this illness, why on earth are you on here? You are nasty bitter person who didn’t get coddled enough when you were in pain. So you need to see the light and realize you should shut up and educate yourself before you add your useless dramatic opinion. So take your 3 purple hearts and stick them where your sun obviously doesn’t shine. I TOOK NOTHING FROM YOU, SO DON’T OFFER ANYTHING.