Spoonie question of the day: Have you ever been mistreated, or made to feel uncomfortable because your disease or disability was invisible or not obvious?

 

How did you handle it? Did you choose to keep quiet and ignore it? Did you speak to that person or ask to speak to a manager?

If you wrote a letter or said something- please share here in the comments section some of your wording. Many people can’t find the right words, but maybe if we all share some ideas- then if it happens again we will be prepared with the “scripting” and confidence of a #spoonie army on how to handle it.  

This question was inspired by someone in our #spoonie family on twitter. Even though this situation just happened to her at a MAJOR theme park, I knew this is something we can all relate to, help and learn from.

read. learn.comment.share.love

Please leave a comment with your experiences.

©2024butyoudontlooksick.com
  • Cerridwin

    Wow, now that’s a type of situation we’ve all experienced. I turned 50 last October, and I’ve been sick since I was a child. I’ve had all-over body pain since I was a young child. Back then the doctors called it ‘growing pains’. It got worse as I got older, and when I was 13 I was diagnosed with juvenile rheumatoid arthritis. At 15 I experienced my first migraine; I was diving into the 15 foot end of a swimming pool and as I breached the water I suddenly felt like someone hit me in the head with a sledgehammer and I lost consciousness. If I’d been alone I would have drowned. After that the migraines got really bad and kind of overshadowed the body pain. One migraine lasted 28 days straight, and I missed a lot of school and eventually was expelled before my senior year because the school officials didn’t believe I was sick that often. When I was 30 my doctor did a simple blood test (that should have been done when I was a child) that showed I did NOT have RA and had been misdiagnosed for half my life. My primary physician diagnosed me with fibromyalgia and referred me to a rheumatologist who was supposed to be an ‘expert’, and within minutes of my first appointment with him he told me that fibromyalgia was a ‘trashcan’ diagnosis and that I should see a psychiatrist because my symptoms were all in my head. Needless to say, I walked out and never went back. Several years later my husband and I went to Las Vegas to spend a long weekend with friends who lived there. Much to my dismay, I realized that I had forgotten to pack my medications. I used Walgreens at home and had been on the same medications for several years, so I went to a Walgreens in Vegas to refill my medications. The pharmacist was extremely rude and didn’t even bother to check my prescription history before accusing me of being a drug addict attempting to obtain narcotics at multiple pharmacies. And he said all this very loudly with at least a dozen other customers within earshot. I was absolutely mortified! I went back to our friend’s house and called my doctor back home and explained the situation. He called in the refills to Walgreens in Vegas and we went back down there to pick them up. The pharmacist still had a very bad attitude and demanded to see two forms of ID before he would release my medications. When we returned home to Arizona I was furious at the way that pharmacist had treated me, so I emailed the president of the Walgreens headquarters and told him about my experience with the pharmacist in Las Vegas. I gave him the pharmacist’s name, the location of the store, the date and times I was there, and the names and phone numbers of our Las Vegas friends who witnessed what had happened. About a week later I got an email from Walgreens HQ apologizing for the incident and telling me that pharmacist had been fired. I was thanked for being a customer for so many years and for reporting the Las Vegas incident. It seems like things like this never end though. I’ve been a patient at a local behavioral health facility for about 8 years for treatment of my depression, anxiety, and insomnia and they prescribe and cover the cost of my antidepressants and anxiety medications. Last year I had talked to the psychiatrist about some cognitive problems that have been building over the past couple of years, and he said he would set up some tests for me. Then he suddenly quit his job and moved away. Nine months later I had an appointment to talk to a psychiatrist 150 miles away via teleconference over the television; someone I’d never met before. She went over my medications, asked questions to update my file, and I brought up the cognitive problems again and asked about getting tested. She said she would set up some testing for me within the next 3 months, and I never heard from her again. So last week I had another appointment with yet another stranger via teleconference; a psychiatric assistant of some kind. He expressed concern over the medications I have been on for several years after much trial and error to find a combination that worked for me. I explained that I am very careful and take my medications exactly as my doctors have instructed, and what symptoms each drug helps with. He pointed out that similar combos were responsible for the deaths of Whitney Houston, Anna Nicole Smith, and Heath Ledger, and I replied that those people also used alcohol and took more of their meds than they should have. I also explained that I don’t drink, and that I had tried dozens of medications over the years before we finally found what worked, and that those were prescribed by the resident psychiatrist 2 years before he moved away. The next morning he called to tell me that he is discontinuing my prescription for Xanax, the only drug that has allowed me to sleep deeply through the night. And I also remembered that he said several times during the appointment, “Maybe your primary doctor would write that prescription for you, but I think you are taking a potentially dangerous combination”. I talked to my husband, who was in the appointment with me, and he remembered him saying that several times too. But back to the phone call… he told me he had talked to the psychiatrist for the facility and they agreed to wean me off of Xanax over the next 3 weeks. I got very upset, but knew I had to control my response for fear of being labeled a ‘drug seeker’ or ‘addict’. I explained that without good sleep my other medications will be less effective, and it would be more risky to have to increase the dosage on my narcotic medicines, but he was adamant. Then I asked him if he or the psychiatrist had bothered to read my chart to see what medications we had already tried in the past. Neither of them had even looked at my chart! He just kept saying, “We’ll find something to help you sleep.” The facility can’t prescribe name brand medicines due to budget cuts last year, so I had to quit taking Cymbalta and replaced it with the combination of a generic SSRI and SNRI to get the same effect. The Xanax is the generic version, and it’s a $14 monthly prescription, so are they trying to save money? I don’t get why this total stranger who hasn’t even read my CHART is meddling with my carefully crafted treatment plan. But I’m stuck because I’ve been unemployed for 2 years now and have no medical insurance. And my unemployment benefit ran out 2 weeks ago. Sorry this is so long… I just feel so hopeless and helpless right now.

  • Cerridwin

    I feel so bad for your little sister. I developed constant migraines when I was 15 and missed a lot of school. I still got my school work done via my best friend collecting my work from my teachers every day and returning the assignments for me. At one point I had a migraine that lasted 28 days straight, and most of the time all I could do was lie in a dark room screaming into a pillow. The vice principal/dean of discipline didn’t like me and was convinced I was faking, and my parents sticking up for me made his attitude against me even worse. Before my senior year I had to take a US History class over the summer so I could graduate on time, and in the meantime this man had been promoted to principal and was definitely out to get me. I had married a Military Police officer at 16 and while I was doing very well in the class, I found I was pregnant. The new principal didn’t like having a pregnant student, even though I was married, and I was not the first girl who had gone to high school pregnant. While I was pregnant my migraines had gone from almost daily to almost never, however I had such dreadful morning sickness that I was hospitalized for 5 days for severe dehydration. When I returned to school after being discharged, and had a note from my doctor stating I had been admitted to the hospital for treatment (which should have excused the absence), the principal pulled out the school’s rules and regulations where it stated that if a student misses 3 days of classes they can be suspended. Well, this guy REALLY didn’t like me, and thought that having me attending classes throughout my pregnancy was scandalous and a bad influence on the other students, so instead of suspending me, I was expelled from school and barred from returning. Normally that wouldn’t have been a huge deal; I could enroll in another school. But this all happened while I was living in the Panama Canal Zone and was going to the ONLY Jr./Sr. High School on the Atlantic side of the Canal Zone. The only other American high school was on the Pacific side of the Zone, 50 miles away by train and there was no way I could do that. Since then I’ve been living with chronic daily migraines/headaches for the past 38 years, and the rheumatoid arthritis I was diagnosed with at 13 was finally correctly diagnosed as fibromyalgia when I was 30. Migraines have cost me jobs, days of extreme pain, and severe depression. I am sensitive to weather changes, hormonal fluctuations, certain foods and food additives, and stress. I have tried countless medications, both to treat and to prevent migraines with limited success that never lasted more than a year or two. Worse, 2 of my children and 1 of my nieces have inherited my predisposition for migraines and get them often, and that makes me feel so guilty that they got those genes.     I sincerely hope your sister has a good doctor and that she is able to find something to control and treat her migraines. I am saddened that she is having to deal with this kind of a health problem at such a young age, and wish her happiness and health. 

  • Deetzah

     I have had similar experiences and I felt horrible.
    I have had a receptionist at a Dr.’s office ask me to come up to the front (in full view and hearing of the whole crowded office) and proceed to ask me what was wrong with me that I had this insurance (SSDI) and that I did not look sick. What is wrong with you? she said.
    I felt my face turn red. I said: I don’t think you are supposed to be asking me that question.

    Another time a clerk at a grocery store saw I was on food stamps (I lost my job due to my illness and needed them for awhile) and looked me up and down and said “cool. I wish I could put one over on the government”.

    How did I feel?
    I felt guilty for looking well and being sick and I felt like I had to prove to people that I was indeed worthy of being on disability. These are all normal feelings to have but not feelings I want to continue to have.
    I don’t have to prove anything to anyone and I really like Ann Landers advice. Why *do* you need to know?
    I keep trying to have the presence of mind to answer people who are rude and invasive like your friend. I am sorry that happened to you.

  • NohardfeelingsABC

    The thought of someone actually being “mistreated” for a not so obvious affliction is very sad and cruel.  You have to agree this may be a result of those people who DO borrow someones handicapped sticker or obtain one illegally because they want a better spot at the mall, sporting event, airport.  But this is not for the rest of us to make a judgement call. Also, many ailments today have no visible signs…not everyone’s hair falls out from Cancer treatments…  Plain and simple …it’s really none of our busines!  I personally park as far away from an entrance because I am blessed to be able to make that walk.
    As far as those who may dare to venture to say “You don’t look sick” , this may be true and you should find it flattering that you look attractive or healthy! Please don’t always think this is meant to say “You’re lying!”  People for the most part are good and in most cases are trying to be optimistic and kind…not the  opposite.  Positive thoughts have been shown to go a long way in healing…

  • SIJDGirl

    Yes!  I made myself walk through an entire airport pushing my son in a stroller because I felt like if I asked for assistance from a cart-driver they would think I was a lazy liar.  I avoided the situation that time.  After I had a round of prolotherapy injections for my SIJD I could hardly walk, and so went to the store with my mother-in-law and she insisted that i ride in a scooter.  I felt insanely awkward, being 24, fit and thin, but I needed it!

  • Jkmk94

    Recently started knitting, since I am unable to do anything physically, or better yet I really need to sit down most of the day.  I feel productive since I have started knitting, and I believe I have found a hobby that I actually love.  So, I joined a knitting group at a local yarn store.   There, I became reacquainted with someone that I had attended college with.  I had always like this person at college and even had socialized with her twenty-five + years ago, so I was excited to see her.  The conversation began with exchanges of what we had been doing since graduation, etc.  Unfortunately, I had read in the newspaper that her husband had died, many years ago, from the result of injuries received in a car accident.  She had heard I was divorced and that I had two children.  She had a fabulous career and asked if I was still working at the large corporation where I had interned during my senior year.  I indicated that I had continued my career for 27 years there but that I was no longer working. 

    I then mentioned that I had been diagnosed with MS (one of three invisible diseases that I live with) and she said, “Oh my you have that in your life too but you don’t look sick in fact you look fantastic.”  I thought to myself, “what is sick suppose to look like”…………should I be drooling, always use adaptive equipment in public, or look so discombobulated?   I’ve heard this before and have often then went into dissertation of symptoms only to have a reply from someone with no medical challenges say, “Oh, I feel like that too on a lot of days too.” 

    What really was extremely OFFENSIVE was the next occasion in a circle of knitters when she asked me,  “Are you on disability or retirement for income?”  This is not the first time that I’ve been asked this question.  After I had recently read an article in “Ann Landers” where as she recommended the following response: why is it important for you to know?, I surely thought the next time I was asked this question that I would use this reply.  I sat there for a minute and didn’t respond, as I thought my reply would sound so defensive.  Better yet, how about I ask her in response to her question with a question about her finances, such as:  “Were you financially taken care of when your husband died?”  Oh, I thought how awful and of course I didn’t reply with that question, or actually neither question.  I just said, “yes I am.”  And, then she asked, “well which one, retired” and I nodded my head yes. 

    Has anyone else had this experience?  What do you say?  How do you feel?   

  • I was in the Air Force when my symptoms became fully apparent. Keeping up with the PT requirements became an impossible struggle. I would go to work, then try to workout after. I was exhausted by the end of each day, and usually slept through the weekend. When I sought treatment, or failed a PT test, the answers were all the same. “You are faking it.” “It’s all in your head.” “You just have to break through that wall.”

    My health suffered. I was sick nearly all the time. My superiors didn’t look at the hard work I was doing, but rather saw me as being too lazy to work out. I would get into trouble for little things, things that nobody else would. I was finally cut from the Air Force under the personnel cutbacks in Aug 2010.

    I was diagnosed with Psoriatic Arthritis in April 2011.

  • Deborah

    Having Sarcodosis, I really say quick pray then I begin to tell the person or persons about my diesease,to set them straight,because their not living with the diesease I am. Well with Sarc we really do not look sick as with many dieseases.Also I give people the website to better educate them on what is going on.

  • Ploo3

    wow, you hit the nail on the head. I have gone thru this over and over. The Er is worthless. Even if you do not ask for drugs,but they want to see you med list, then you hear them on the other side of the curtain saying, oh, she is a drug seeker or she is not making enough noise to be in that much pain. Well, hate to tell people when pain is that bad, any type of movement makes me hurt more,so I am very quiet and can barely speak. Yes, and getting yelled at by people for using my so called Grandmoms handicap sticker. I did not ask for one for a long ti me caue I thought I was too young and people woud not get it. Well, I was right,but my doc was like, you have not gotten one yet?? well, I was in a wheel chair by then,so I guess I thought people would get it. Then when I could walk again,, same old things. but, then when I got my service dog, More people get it,so some people do not cause they think they are only for the visually impaired. Wow, let them feel so fatigued and in pain and have to walk really far to get to the door that has o handicap push and too heavy to open and then see how far you can make it to get to that one store that you wanted to get to… I used to love to shop. I hate it now. TOo much pain and hassle. But sometimes you have to grit nd bare it. wow, and the people that say, now that I am not in a wheel chair and 5’8 and down to 100pounds,but the Er would not admit me or even give me and Iv cause I was workers comp and or medicare secondary. They would nt touch me. I almost died that year. I was told that they could not take me until I Went into organ failure and this was a medical school hospital. they called me great doc tht I had recently found who told me to go there. And they called him up and said you have to make up something worse or we cannot admit here. Oh, RSD in my digestive tract and then if they did blood work, they would have found that I had acute and chronic pancreatitis. I had hyper parathyroidism and kindney stones three times prior to having gone down to philly to get it properly diagnosed at Jefferson and was in surgery in a couple days. No  more kidney stones,but still pain in myabdomen. If that Er did blood work and did the amylase and lipase with they would have seen that I had very bad pancreatitis. The GI guy I went to prior said to my mom, cause I was a runner prior to all this, that maybe I had underlining anorexia mental health problem. I wished that I did cause thenn I could at least get into Renfru and perhapps get blood work there. Well, Renfur said that I was way too medically sick to be able to go into their program if I was anorexic. My psychologists had a specialty in eating disorders and chronic pain. They did not llisten to her Almost died that summer. Good system.AND WHEN I was not looking that sickly, then evreyone would be oh, you look so good. I guess you will be able to go back to work again… They did not get it. I wanted to work again and not feel so unproductive to societly. None of us wnat to feel like that. Patti 

  • Butterfly_w_broken_wing

    Where to begin? Getting a dx is really hard when you’re a strong person and good at hiding your pain. I had ppl at an old job tell me I had ‘issues’ and indeed I did, but of the medical kind. I had someone accuse me of not just taking pain meds at work (which I wasn’t) but also distributing them. People are hateful when they thing you might somehow be better off than they are – which is twisted. I would LOVE not to be sick. Just because I don’t show my pain, talk about it ALL the time, and heap my burdens on others…does NOT mean I am not sick! I promptly got another job, changed my circle of friends, found a new doctor, and began advocating for myself in sometimes very harsh ways. I don’t suffer idiots gladly anymore…

  • xSassySusiex

    First get your current doctor to refer you to a rheumatologist. Once you see the specialist and feel comfortable with him/her FIRE your family doctor and find a new one. Doctors work FOR YOU. You pay them to know the things you don’t know so if they don’t know either go find a different one that does. And if one specialist isn’t helpful get referred to a different one till you find one that will listen and help. 

  • xSassySusiex

    Telling acquaintances how you really feel simply alienates them but when you are that tired you have to be honest or you won’t be able to finish your errands and then get yourself home. After a period of time you find that nobody will stop to talk to you because you no longer have friends. Very few are willing to make the continued effort to stay in contact with you on your terms….even though you have no say in those terms. You only have so much energy and that energy has to be used for the absolute requirements of your life. That’s been my experience.

  • xSassySusiex

    How do you deal with a son who deletes you from his life because he doesn’t believe you are sick? Just one day hands you a “hate-mail” and moves out of state with no forwarding address and no phone number? Almost 2 years and even though I tell myself that I don’t need him it still hurts. This is my own kid; a preemie twin that I went through a lot to carry, deliver, nurture, and raise. A lot. And nope I was NOT dependent on him; he just refuses to accept me as I am. This is just one experience that has created my whole “beat down” feeling.

  • xSassySusiex

    My husband was tdy in Italy for 3 months; a neighbor stopped by a couple months into the tdy. First thing he said was “we can’t help you if you don’t ask for help” which startled me since my 27 y/o son was living with us while waiting for med school to start so I reminded him of that. Then he lit into me about not helping other people in the neighborhood who are “really” sick so I said “yeah I’ve been really sick too” but he continued to berate me saying “well its not like you can’t get out of the house” (I hadn’t been able to) and “its not like you can’t drive yourself around” (I can’t). I’m sorry to say I simply shut down, told him to have a nice day, and shut the door. When I’m that sick my brain doesn’t come up with the snappy comebacks the way I wish. But the worst treatment for me is not being listened to by the doctors! I had lost the use of my left arm at one point; asked about an MRI due to previous spinal cord damage; the doctor’s response was a dismissive “its too much paperwork”.  I had to get all up in his grill (lol) about it and subsequently found out from the MRI that I was in danger of becoming a quadriplegic if I didn’t have surgery immediately! Similar problems with “well-intentioned” neighbors throughout the years, occasionally a family member gets fed up with me “being lazy”, doctors who don’t think before they prescribe a medication. Experienced it all so now I’m very extremely sensitive about it. I have nothing triumphant to add; nothing pithy to add. I have lupus, chronic severe gastritis, diabetes, severe Raynaud’s, debilitating migraines from spinal cord damage, syringomyelia, costochondritis, and cubital tunnel syndrome among other problems. Mostly I stay home because its too painful to go anywhere and usually I’m too exhausted to go anywhere after I’ve gone through the process of getting ready to leave the house. So when people see me its on one of my “good” days. This has been going on for 25 years and after years of “pushing through” and raising 5 boys I am now beat down. I don’t know how to deal with people and their lousy attitudes anymore. If I could change myself I certainly would. Anybody who thinks I sit here day in and day out because I want to and because I’m lazy is just plain insane. I’m not weak; I’m sick. There’s no “working through” most of this stuff anymore. So this is my rant; my vent. Fortunately my husband is very supportive. He doesn’t understand because he is uber-healthy, but he is supportive. He’s the one that reminds me about budgeting my spoons. I don’t know where I would be if not for him. Thanks for listening!

  • Mona

    Yes, yes and yes again! I have battled severe RA since 2002. On good days it attacks my hips, feet, hands and shoulders. I too have a handicapped permit. Some days I want to be “normal like everyone else” and brave the “short walk” to the grocery store w/o my cane. Or, it hurts my hands, elbows or shoulder too much to use it. If I can just take those “few steps” I can lean on a shopping cart. I just have a few more steps.. Almost there…. Don’t let my face show how much it hurts…. Oh I wish I had taken my cane.. Is it closer to the car or the store???? Because of this, I receive glares and honks from people who don’t think I deserve a handicapped permit. Or who think I am walking too slow. I see in their faces “really? you look fine to me. Hurry up!!”  Yes my permit is one of the “advantages” of this disease. My suggestion? I have left notes on the cars of those able bodied people who do not
    have a handicapped license or permit who park in one of the FEW
    handicapped spots. Notes indicating “this was a very bad pain day. I
    REALLY needed that spot today. Thanks for thinking of me when you took
    it!” Or, take a picture of their non handicapped license plate, their rear view mirror, w/o
    a placard, and the handicapped sign showing where they parked and
    report them.  At the least, gather the energy to look someone in the eye, smile, and wish them a good day. Don’t use “one of your spoons” stressing about what others think of you. I wish you all a day of surplus spoons,  and strength to handle what your body gives you.

  • Holley

    I have an autoimmune blood clotting disorder (in addition to kidney cancer, mechanical heart valve and a cyst on my pineal gland or the brain tumor as the neuro surgeaon calls it). A few years back I went to the ER because my doc thought I might have a clot in my leg. Because I wasn’t in pain, the triage nurse put me at the bottom of the list despite how dangerous a clot could be. 9 hours later when my name was finally called, I jumped up and shouted “woohoo!” Two girls who’d been sitting there less time than I looked at me and I heard one say “she doesn’t look sick” so I leaned over as I passed, stared her in the face and said sternly, “I’m sick on the inside.” At the CVS for flu shots they had a limited amount and told me I would have to wait since I was young and “healthy.” I read the back of my medic alert necklace out loud and was allowed to stay 🙂 I was sitting in a preferred seating for handicapped spot on the Metro train one day when a man came up to me and asked to sit down. Rather than launching into my entire medical history, I grabbed my many bags and coat to alow him to sit despite how exhausted I was. I don’t have a physical disability like he did.

  • Starrymirth

    My younger sister has had constant migranes, headaches and nausea (plus diabetes) since she was about 7 (she’s 18 now). On bad days she would do her homework in the bathroom, so that she would be close to the loo if she needed to throw up.  She had a serious diabetic low after a school dance (age 16 or 17), and woke up with memory loss – she lost about a month or two – after a while it seemed to recover to about 2 weeks missing.Many of her teachers were very SCATHING about what they considered to be just another excuse, concocted to get out of more work. She had lost quite a lot of science and maths, which I helped to tutor her with, and still has trouble with memorising.  I don’t believe she ever spoke to the teachers in question. 

    On a separate occasion, the principal popped into the sick room, and asked  “How bad can your migraine be if you can open your eyes?”

    My little sister is one of the strongest people I know, and I have the utmost respect for everyone who is constantly battling illness, especially when it’s invisible. 

  • Kathryn

    I hear you! I’m a young person who parks handicapped too and I carry the paperwork with me at all times to prove the permit is mine rightfully (just in case someone calls the cops on me). I have been looked at like I was the most disgusting person on the planet more times than I can count getting in and out of my car at the grocery store.

    It’s like yes i’m young, no I don’t look sick (most of the time) – but dammit I have to live with MS – the only “advantage” it gives me is good parking sometimes. Let me tell you how i’m really being a bad person by parking up close when every move I make hurts and i suffer from crushing fatigue. Excuse me for wanting to exercise my right to save what little energy I have for more important things than trekking across a gigantic parking lot.

    Hmph!

  • Bevshanks

    Yes, on many many(far too many)occasions.
    Everything from being stared at in a cafe as I was

    doing a blood test(I’m diabetic) to being asked by

    my manger to do my injections and tests in the

    toilet because on of my colleagues was afraid of

    needles(I mean come on!!!!), to being asked by

    my director if i purposely hid the fact during my 2

    month trail period, and then told by her that had

    she known then she would not have hired me. 

    Oh yes, and being told by the worlds largest

    international (hotel and cruiseship)Spa operator

    that “ho sorry, we don’t hire diabetics.  Also

    having “bloody dirty junkie” shouted at on a tram

    as I raised my arm to hold on which revealed

    bruising around my inner arm veins from a recent

    blood test taken at the hospital.
    My reactions have been varied – when I was

    younger(in my 20’s – I was diagnosed at 19) I said

    nothing, put my head down and carried on.  This

    was before I every got really sick with it though. 

    Back then I didn’t test or inject in front of anyone

    except for my immediate family and even then I

    could feel them staring – it was all very new for

    them too as there had never been any serious

    illness on either side before me.
    After having wakened out of my first coma my

    attitude changed – I refuse to go and hide away

    to do tests or injections for anyone should it be

    colleagues, public, bosses, whoever.  If they don’t

    like well that’s just tough – I don’t like it either but

    I’m not going to allow myself to be treated like an

    outcast because of other peoples ignorance.
    That said I am not a rock – I still feel the stares

    and see the whispering mouths – sometimes I do

    ask “can I help you? no? well would you mind

    staring at someone else please because I find

    your behaviour towards me unsettling”. But mostly I say nothing – I just look back.  Easier that way.  Again, I’m not a rock.  I have been just really worn out for the past few years and I am sure that this has added to all the straws on the camels back.

  • Marge

    Yes, I was harassed by an elderly woman when she saw I was parked in a handicapped spot. I had my ticket showing, but she accused me of being too young and I should be oarking elsewhere. I turned around very slowly and said to her that I only wish that I was not handicapped and could walk a much longer distance and do not judge a book by it’s cover. I told her also-Please walk a mile in my shoes and really see how I feel. She made some nasty comment and walked away. I guess you can’t be young and handicapped -just old. We only wish we did not need to park in the handicapped areas. I wish that I could run again and not be in pain. 

  • Llkaufma

    Question to the blog moderator: a few days ago when this was first posted, there were numerous replies (including mine) and now they’re all gone… what happened?

  • Kathryn

    Oh yes.  On many many occasions.  It took me 5 years to get a diagnosis of MS because my first neurologist believed I had a “degenerative neurological disorder complicated by somatization”….basically unexplained symptoms he felt were unrelated and were possibly in my head.  He eventually stopped even trying to pretend that he was paying any attention to my case…I started having bad hand tremors and dizzy spells so I went in to see him before my normal 3-month follow up – he prescribed me a medication for the dizzy spells and sent me on my way…then a month or so later the tremors had gotten worse and the dizzy spells had escalated into vertigo so I went back to see him again…he hadn’t even made a note to himself about my previous visit so and basically told me he had no idea what I was talking about…I left that day and never saw him again.  It took me 2 years after that to work up to courage to go to another doctor…because I felt like they weren’t going to help me so what was the point?

    Which helped me NOT AT ALL with my family – who couldn’t even begin to understand what I was going through – having all these problems at the age of 19 years old.  My father out-right didn’t believe me…and my mom just felt sorry for me at best.  My siblings simply ignored the issue entirely and it took me years to figure out to how to talk to them about it.

    I was a music education major (double majoring in instrumental and voice) when I had my first couple of relapses.  For the first one I lost the feeling and coordination in my hands for 2 months – and they came back eventually but they were never the same – so since then I have been unable to play any instruments.  Due to this I scaled my major back to just voice – but we were still supposed to take “instrumental methods” classes – where you basically get a crash course on how to play and teach someone else how to play all the common band instruments. 

    The teacher I got for the first such class I attempted to take flat out did not believe that I couldn’t play instruments due to my neurological condition and told me that if I wasn’t even trying so he was just going to fail me.  I went to the head of the department about it – who told me I should just give up and switch majors because I would never succeed with my limitations.  Which was completely illegal – they are not allowed to fail you due to a physical disability – they should have modified the course for me to be able to pass it given my limitations…but I was so discouraged by the way I was treated that I didn’t even try to fight it. 

    Since then I have learned that I MUST be my own strongest advocate.  I can CHOOSE not to accept treatment like that from a doctor or from anyone else.  If a doctor won’t help you there ARE other doctors out there who will – so stop paying them your money and go somewhere else!  If your friends treat you badly or stop hanging around you because you have a disability – they were never good friends and you don’t need them.  Stand up for yourself – because you are worth it.

  • I was diagnosed with fibro, eleven years ago. It took six months of sitting at home, and waiting to see doctors, to get a proper diagnosis. I doubt it would have happened that soon, but I saw a television show, one morning feeling horrible,…wherein a Dr. Nye outlined all of the symptoms. I had them all. I called my G.P., and asked for the lupus blood test, which came back positive.

    Prior to my seeing the above television show, the G.P.’s in this practice, who I had been going to for more than twenty years, all said it was menopause, or depression. They insinuated that because I was a woman, that I was hysterical.

    My co-workers, back then, I believe, did not believe me. They did not believe how awful I felt, and that I could barely walk. I think, from a few comments, that they thought I had lost my mind, or I was trying to quit my job. I loved that job, and if they had been paying attention, at all, they would have realized that, but they chose the path of least resistance.

    For years, after my diagnosis, even my husband thought I was just being lazy! We had been married thirty years, when this happened, and I worked like a mule for all thirty of those years. I guess what he was saying is that since I was no longer able to wait upon him, hand and foot, that I was shirking my duties. I am still angry about that…

    Up until a few years ago, I never told anybody, who did not need to know, that I had fibro, because of the comments, and strange looks I would get from people. It’s a shame that you have to suffer like this, and be ashamed.

  • Chantel

    I am a 22 year old college student with an autoimmune liver disease. One of the symptoms is very irritated itchy skin. My body would itch from head to toe and I would literally scratch my skin off. (thankfully medication has helped immensely and it’s no longer that bad) My family and I went on a cruise a few years ago when I was at my worst. My mom found out how insecure I was about my scabbed and bruised legs but talked me into wearing shorts and bathing suit out to the pool. I was laying on a beach chair when I noticed a group of girls looking at me in disgust and whispering I must be a druggy or something. I wore jeans the rest of the trip.

  • Lin

    Question for you if you don’t mind. First a little background, I do, if available, use the handicap restroom due to flair ups of arthritis and back/neck disc issues. And I have heard the comment ‘Well! I wonder why she’s in there’ My standard response has been to ignore the comment, or upon leaving ask if they’d like to trade places, but I love the comment above ‘I’d be happy to trade places with you but I don’t want your stupid’. I won’t every say it, but now I will be thinking it you can be sure. For a short time I had to use a cart in a store and I appreciated offers of assistance, but also remember the ‘looks’ and the people who actually backed off to use other aisles – I wanted to yell ‘it’s not contagious!”

    Now to my question…..I want my two grandsons (8 and 5) to be comfortable in aknowledging folks in chairs/scooters or who are having difficulty. As my children were, they have been taught to hold doors, offer to assist or carry items, both thru words and seeing us respond in this way. Would you ever be offended in that situation? We normally get a smile and a thank you, and we certainly don’t mean to offend in any way. We try to judge our assistance by observed need and anticipated response, but maybe we’re reading the situation wrong. Any advice?

  • Sandy

    I have a friend who gave me this advice.

    If you don’t say “That’s not acceptable and do not ever do that again” then you have just said to them, albeit subconsciously, that it is acceptable if they trivialize your condition

    So remember these words because it worked for me many times.

    “That’s not acceptable and do not ever do that again”

  • Fedoriarty

    I was taking the elevator down from a second-floor class because my knees and ankles were bothering me. It hadn’t started out as a cane day, but was fast working up to one.

    A gent beside me in the elevator made a snide remark about how lazy people are if they’re taking the elevator one floor. There was a bus to catch, so I didn’t get into it with him. Looking back, I wish I’d taken the time.

    Invisible illnesses are tricky. Unless I’ve got a hand brace on or my cane with me, nobody can tell why I’m moving slowly or having a hard time holding things, getting out my wallet, etc.

    Since developing psoriatic arthritis, I tend not to make snap judgements about those sitting in accessible seating who don’t look like they need it. It still pisses me off, though, when people who really *don’t* need it refuse to give the seat to someone who does. When the only one getting up to offer an 80-year-old woman a seat is the person with the cane, there’s some serious entitlement going on in our society.

  • Rachel

    I had one rheumatologist tell me after 3 months of treating me “you are a mystery patient and I don’t exactly know how to treat you” I got up left the exam room and never looked back…

  • Ofelia

    Hi! I’m new here but thought that I would make a couple of comments. I have been fighting with Fibro. for many years. I finally got diagnosed when I was working as a Parking attendant in a booth.
    Now that sounds like an easy job & it was, except for my Pain. By the time I left that job I was down to 4days a week, & I slept & ate for the next 3 & then started All over again! That was No way of life & was draining on both myself & my Family. I’m trying to get disability but as most of you know it’s a real fight!
    One day though I was with my Husband & had my cane, & disability Parking permit. My husband told me I should get a scooter cart to shop in so I would have some Spoons left when we got done. I had never done this before, so was feeling very timid & out of place. An older woman who was getting one of these carts as well, told me “It’s Okay Honey, you just turn the key on & Go!” It was so wonderful I thanked her & went on my way. Now whenever someone’s rude or I need to ride around in a store I think of that day “It’s Okay Honey you just turn the key & Go!”

  • Chris

    Hello, I also run into this problem. I fell on Easter Sunday last year and slid down an embankment. I was taken off the mountain by firefighters in a litter cuz I was unable to walk out myself. I got to the ER and the doc saw my fentanyl patch and said I can’t give you any meds. I said I didn’t want meds, my boyfriend insisted I go cuz I dislocated my shoulder and hit my head. There are too many doctors who see a list of meds and assume you want more.

    Another big problem I have run into is with a family member who insists there is nothing wrong with me and I just need to suck it up. She was here one weekend and I was having a major fibro flair and she insisted I just needed to walk it off. I couldn’t be in that much pain. After all she had her wisdom teeth out and only took her percocet for 1 day. She had done a school paper on fibro and she knew my meds were not necessary and fibro is all in your head. I think this hurts the most because it is someone who I love and care about and it is really straining the relationship.

  • Laura

    Lorna is right…I had family disbelieve me, my own brother said I was trying to screw the system. I was in administrative management and made a whole lot more than the poverty level amount of disability insurance I am paid monthly.
    After six years… some of my favorite answers to the ignorant questions are:

    What is your specialty…Dr…….? (extending hand to introduce myself)

    I’m Sorry, but I don’t have the time or energy to explain my disabilities to you … and as complex as they are, I doubt you would be able to comprehend them all.

    When asked how I am doing … I usually try and find something positive such as “As well as I can manage”.

    I have both FM and CFIDS and daily I have to tell myself that normal people are just ignorant to the complexity of our lives…besides it takes too many spoons to argue.

  • Kelly

    I haven’t had this happen (yet) thankfully. I guess eventually I’ll have to deal with the issue. What I’d like to know is, what do you say when you run into an acquaintance and they ask “how are you?” It’s hard for me to say “doing good!” and smile when all I want to do is stop the pain that’s shooting through my legs and arms and feet and I’m so tired I want to lay down but can’t because I have 2 more errands to run and now I’m stuck talking to someone. You know? Does anyone ever tell the truth about how they really feel? If we all started telling the truth, would it make a difference in how people look at invisible illnesses?

    Just wondering. 🙂

  • Lorna

    Interesting… the very first reply (Shari’s) raised an issue that comes up a lot… wishing we had a “good” comeback.

    I was in a workshop about how to deal with racism, and the same issue came up. The workshop leader explained that it isn’t our responsibility or obligation to be witty or funny or even tactful when people say something stupid and offensive… even if they didn’t “mean” for it to be hurtful. She noted that we’re conditioned to think we need to have snappy comebacks by two things: one, everyone on TV and in movies seems to, and two, we’re taught to be polite. Well, we’re not actors on TV whose purpose is to entertain, and we are not rude when pointing out someone ELSE’S rudeness.

    So. So what?

    I’ve learned I don’t have to be witty, funny, educational, or tactful. I don’t have to be obnoxious or hurtful, but that’s about the limit. So when someone makes jokes about your wheelchairs or canes or other aids, folks? Just make direct eye contact with them, and say something like “No. No, you wouldn’t want to trade places with me. Believe me.” Or “Actually, given my chronic illness, I DO need this now.” And it’s even better if you can follow it up with saying gently, “I’m sure you don’t mean to be rude or hurtful, but you are.” Then walk/wheel/motor away.

    And for the people who give you a hard time for your disability passes or requests for accommodation? Again, they’re in the wrong, not you. I find saying, “you have neither the knowledge or the right to comment on my disability. Leave me alone or I will call someone in authority to report your harassment.” AND THEN MOVE AWAY. If you remain, a lot of idiots take that as an indicator that you are welcoming an argument.

    Don’t waste your spoons.

    I hope this helps… Cheers!

  • I have had people say, your just in a wheelechair so you can get up in fron of the line. ARRGGggggh I am so glad I don’t have to use it now.
    Then parking in a Handicap spot as I went into the store for milk and bread, a woman grabbed my arm at the register. She said: You don’t look sick to me. I was going to key your car. I said to her as I heard over the speaker: Security please come up front….. Lady, I”d gladly give you my disease, but your so stupid I wouldn’t want to trade places. Then security took the woman and her elementary school daughter into a room.

  • Dawn

    I have Arachnoiditis and use aids at the ripe old age of 33, so of course I hear a TON of those comments. A woman at church one day came up and told me what a lovely cane I have, and to save it for her when she got old and needed it. She was already well in her 60’s at least. It struck me very wrong and hurt my feelings. I think she didn’t MEAN to be offensive, but it sure came off that way! My husband was so upset. He knows it bothers me as it is, without the insensitive comments!

  • This weekend I was in so much pain with chest congestion as well as amped up fibro pain that I agreed to let my husband take me to the hospital. (I hate to go to my home town hospital.)
    We live in a small town and it seems that many people go there to get a pain injection on Saturday nights.

    The er registered nurse didn’t know what fibromyalgia was. She didn’t know how to spell it. My husband had to help her. They finally got through the paper work and allowed me to sit on a gurney. They swabbed my nose and found no bacterial infection. I had a virus.

    The er doctor came to my gurney and told me to up my fibro meds for a few days. He said, “Are you ready for the Stadeall (sp?) now?”
    I didn’t know what that was. I asked and he seemed surprised that I wasn’t there for the narcotic. I told him to give it to me only if he thought it would help me.

    I got the shot and a lecture that they couldn’t do anything for me, for the virus, for the fibro…nothing.

    I don’t know how to get to a specialist without being referred by a doctor. I asked my doctor to refer me and he said that he didn’t know anyone who knew anything about fibro. I am speechless. I am also sorry that I am whining so much. I am still sick with the virus.

  • Carol

    One of the most hurtful situations, even after my syndrome and dysautonomia were diagnosed, was when others talked of their jobs and careers and never included me, never asked me how I was doing with my health problems. It was as though “You have a health problem. You, therefore, cannot be in this conversation. You have nothing to add.” The great day was when I was in a group setting an we had to go around, introduce ourselves, and tell a bit about ourselves. The first started with her name, her town, and her job. Got to me and I could stay the same and say I was a freelance online editor. Why do invisible disability people have to be credible by working? We are human beings and thus allowed to live and love and be.

  • Carol

    When my syndrome symptoms were diagnosed, a supposed friend said to me, “You can’t be too sick. You’re smiling.” That hurt. I learned to ignore those comments because they were untrue. While I still speak to the person when we come into each other’s presence, I’ve learned to flush away those ignorant remarks and free my mind for good thoughts.

  • Brian Travis

    I know how all of feel, I have to use a motor cart when we go any where like wal-mart, menards and krogers. You get this look like what are you using that for, I don’t see anything wrong with you. There are other people need that more than you look. Plus they see you coming down the ilse and they think you can stop on a dime but you can not. Sometimes i like to run them over and say now you know why and carry a big sign on the back of the cart. Some times I hate even going to the stores due to the pain in the neck looks that we get. Plus sometimes there are not a single cart so I have to wake it and so tired after wards that all I can do is go to bed when we get home. There are people that need to walk but don’t and they use a cart instead. You hear the kids with them saying this is fun that we don’t have to walk and the person starts laffing. I am so done with having to explain my self!!!!!!!

  • Every day is a struggle

    I have an invisible illness as well, and yes its all in my head – literally. Its a brain disease that causes chronic daily pain and I’ve had brain surgery but by looking at me you would never know it.
    At a recent visit a nurse told me “its just our little secret” and that “no one else needs to know” “becasue you look so normal on the outside, and healthy” and I sat there in disbelief. How unprofessional.
    Everyday I deal with people who look at me with disbelief because I no longer work due to the pain of the headache and migraines and everything else that this disease has caused me since 18 on. I’ve lost what my Mom continually tells me are the best years of my life to this disease but I still won’t give up the fight. I have too many years left and keep looking for a drug free way to deal with the pain.
    I wish people would just understand that things are just not always what they appear to be on the outside. That is why when I meet people I look into their eyes, you can always read people by their eyes.

  • Amanda

    I get it a lot usually in two instances – parking and work.

    With the parking, people have assumed that I’m just lazy when I park in the handicapped spots. I’ve had older people yell at me, try to call the cops on me, etc, but younger people do it too. I had a man move in between me and my car door to try to take my placard from me. He said that I stole it and that it’s not right to use it. It was utterly unbelievable. I’m thankful there was security nearby to help me.

    At work, a lot of times I tend to work through pain. But I overdo it sometimes and have to leave early or work from home. Most of my coworkers know the situation and are understanding, but some think I get preferential treatment. And at my old job, I was threatened with being fired even though my doctor had cut back on my work hours to help me heal from a surgery. When I was recovering, I had calls daily asking me to come back to work. Everyone there assumed that since I didn’t look sick, I wasn’t.

    So ridiculous.

  • Karen McCarthy

    I have Trigeminal neuralgia, an invisible incredibly painful disease of the very large facial nerve. My pain is made worse by many things, but most of all cold wind. My friend and I had plans to take our little girls to “Santa’s Village” but the day came and it was very cold and windy. For this reason, I have been given a handicap placard for my car (I’m also on long term disability). When we got to the amusement park, I noticed a sign saying something to the effect of ‘handicapped patrons come to office for special pass’. So I went to the office, explained my situation and asked for passes for the two girls to go to the front of all lines so that I didn’t have to wait in the cold wind with my disability. The woman gave me so much hassle about my ‘invisible illness’ I got so frustrated. There was no way I could spend a day in the cold and this woman was ignorant. At that point, I just asked to speak to a Manager. The woman said “I’m the owner”. Well I was flabbergasted! It was then that I calmly explained to her that if she refused to accommodate me, I would contact the State, the Feds and the ACLU. She quietly complied and we had a fabulous day!

  • Three years after the auto accident that disabled me from my career, changed my life and left me with muscle & nerve damage and chronic pain, I sat in court for my settlement hearing.

    After hours of testimony by friends, doctors, specialists and my lawyer, the judge turned to me. He said, “I hear all this Leslie, but you don’t look like you are in pain.”

    I responded, “Every minute of the past three years of my life my body has been screaming out in pain. In the process I have become one incredible actress trying to deal with pain and hide it from others so as to appear normal. Obviously I’ve been successful.”

    To the judge’s credit, he heard me. My settlement was very fair.

  • I’ve been having issues with my hips and knees so I’ve been using the accessible stalls in public restrooms lately -just so I can use the grab bars. No one has said anything yet but I’m always worried someone is going to give me a hard time because I can walk fine. It’s the sitting and standing that hurts and can make me wobbly.

  • I have Cerebral Palsy from an accident at birth and RA so i have always heard unkind remarks but, since the RA has gotten worse I have heard ” it must be so fun to ride in that scooter” then they go “beep beep”

  • Debbie Astle

    I had a retired registered Nurse look directly at me and say in a very nasty tone “There is Nothing wrong with you!” It happened at my Mom’s house. The nurse was a friend of my Mothers. I was feeling rotten that day, was totally out of spoons so I did nothing.

  • Doc ForthePeople

    I am a retired physician but my active practice was devoted exclusively to providing care to people suffering from fibromyalgia as well as other chronic pain conditions. I am sad to say that I have seen many glaring instances of mistreatment of people from other “disbelieving” doctors. For example, teh missed diagnoses and consequential mistreatment include: torn muscles, meningitis, collapsed lung, not to mention the suffering from untreated pain. I believe the current medical climate is diverting attention to the opioid drug epidemic (a problem that is rarely occuring among chronic pain sufferers) rather than to the intense research that is needed to better understand the real scientific basis of this disease. Even worse pain sufferers including spoonies are being stripped of their basic dignity because the medical profession continues to cling to the old myths that “it is all in your head” or “it is not really a disease” or worse that “if you complain of pain you HAVE to be a drug seeker and therefore not deserving of treatment!”

    Thank you for raising this topic and I hope that my post is not out of line.

  • Lara

    On another forum for those of us with mitochondrial disease a woman posted her response to the age old comment, “But you don’t look sick”.

    Answer: “Bur you don’t look stupid.”

    Not kind, but it was born of sheer frustration we can all attest to.

  • Pam

    While my husband & I were deplaning at one time someone mentioned “boy, they really had problems getting your blood tests”. My arms have ALOT of black marks due to Plaquanil. Here there is a line of people behind her listening to all this. But, that’s OK, I told her I have stupid Lupus & this was a reaction to meds. Actually didn’t bother me since I got to “mention” Lupus. I do think it was a bit rude tho especially since she was a nurse. Probably a couple too many drinks on the plane. 🙂

  • The most common issue that I encounter are ignorant remarks regarding my wheelchair. You know, like when I’m wheeling through the hospital and someone offers to “trade places” with me. Yeah, I’d love to be able to walk. Trade ya, in a heartbeat.

    I wish that I had a good comeback. Alas, I do not.