Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness

 

Sometimes you just gotta have a sense of humor!


The top ten worst suggestions commonly given to someone with a chronic illness:
1)Have you tried holistic options? (many. I’ll bring it back up with my doctor on my next visit, thanks.)
2) Could it be your stress? (My opinion is, it is my illness. I’ll bring it up with my doctor though, thanks.)
3) Could it have to do with the altitude? (I’ll bring it up with my doctor…thanks.)
4) I read in {insert any generic magazine here} about a new medication. Have you heard about it? (I was on it when it came out 17 years ago. but I’ll bring it up with my doctor. thank you.)
5) Have you thought about being in a trial study? (I’ll ask my doctor. thanks?)
6) WOW. If I were you, I don’t know what I would do. I might just kill myself. (Thanks?)
7) Have they found what is causing the problem? (no. my doctor is an idiot. I’ll remind him, thanks!)
8) Have you tried hypnosis? (I’m still sick, but when the phone rings I bark like a dog.)
9) Have you googled your illness? (….no! thanks!)
10 Have you ever thought you were getting sick because you haven’t wrapped your house in aluminum foil because, you know, the aliens have been bugging our houses for the past 30 years and in some cases, making people really sick. I read on…..gee I lost the web site. but it’s true! I heard it from Sally’s cousin’s sister-in- law. And then every time you use deodorant you would think you would be warding off these bugging rays, but it still makes it worse, so you are not being pro-active to your health by wearing that deodorant. I can’t believe you! If you wanted to get better you would stop wearing deodorant..(voice gets fainter and fainter the further you just walk away.) THANKS!!!!!!!!!!
Article written by Amy-Beth Maran , © 2007 butyoudontlooksick.com

←  Older Comments
Newer Comments  →
  • Magda

    I have me/cfs, and fibromyalgia, and severe endometriosis. (these three like to hang out together and gang up on me). However my best mate has systemic schleroderma and her husband is dying from motor neuron disease, so I really can’t complain.
    Reading this page and the comments, I haven’t laughed so hard in ages, such great stories.
    Now, my best comment ever was years ago from my cousin at our shared 21st bday dinner….
    “Oh my gosh you look so beautiful and thin, I’m so jealous!”
    What I said: “Thanks?”
    What I wanted to say: “Yeah, it’s so easy to lose weight when you can’t take solids. 20 pounds in one month, no problem! Infact, when I get home what I’ve just eaten will probably be coming up too, and I’ll spend the rest of the night writhing around in pain. Really burns the calories!”
    Thanks for the laughs, Magda.

  • Lincoln Rose

    These things feel so good to read! I’ve been diagnosed three different times, now it turns out it’s something hereditary that never really flared before called Hereditary Neuropathy with Tendency to Pressure Palsy. Pain just flares, sometimes I wake up and can’t go the places I thought I’d be able to go last night when I went to bed. I use a cane now. All this has happened since Sept 09, so it’s been a huge adjustment, even though I already had other disabilities and thought it’d be easy to adjust to.

    All the guys at my church think I look fabulous because I dropped 30 lbs during my hospitalizations! Since I got to a predominatly LGBT church, every time they say that, I wonder if they would say that to someone living with HIV or AIDS. They don’t seem to connect that I’m losing weight because I’m sick. Actually, there is a guy in the church with HIV, and whenever he hears one of the guys “congratulate” me, he rolls his eyes and comes over and hugs me.

    I have gotten a lot of these comments. The most earth-shifting thing for me is the naturopath who’s cared for me for 8 years no longer seems interested in treating me. It appears to be because I’m “buying into Western ideas” about how ill I am and whats causing it. But we haven’t really talked about it. He just stopped answering my text messages/emails.

  • Marjorie Hufham

    I have Systemic Scleroderma, with Severe Raynauds in my hands and feet, and I had to go on disability. I only use the handicap parking sites when My knee hurts so bad I can hardly walk, or if I know when I leave the highly air conditioned store, that I won’t feel my feet or hands any more except for the pain. I hate it when people tell me I’m just getting old, and I hear the busy bodies say if you’d just come to church you wouln’t hurt so bad or if you had more faith( the Lord and I are very close, thank-you)you’d feel better. And if I mention feeling daggers with intercourse they mention lubricant or AH!, and that you’st to be your main thing wasn’t it? Then several persons have tried to get me to participate in walk/run a-thons for worthy causes. I fight back the laughter or anger and try to really pray they’ll wise up.

  • Angela

    All of your posts make me feel so much better. I’ve been in pain for the past two decades. I learned really quick to just not say anything about it because, in any given group of people, there is always someone who has pain that is worse than yours. For example, “I’m okay today, but night before last, my hip dislocated in my sleep and I thought I’d never get it back into place. The next day I could barely put weight on it.” Person in group: “Hip dislocation? Oh, honey, that ain’t NOTHING! I had a planter’s (I know it is a plantar wart – but that is what she said) wart on my foot and it felt like I was walking on thumbtacks!”

    The sad thing is that, for most of us with chronic pain, we can withstand far more pain than the average “normal” person. The first time my pain control specialist gave me trigger point injections, he said, “Man, you’re tough. I’ve seen war-hardened Marines just about cry when they get these and you didn’t even flinch.”

    People need to understand that there is a difference between intense temporary pain and the chronic, debilatating, exhaustive pain seen in chronic illnesses.

    Heck, I’ve been fighting with Social Security for the past 6 years because, in their opinion, my disability could not be substantiated with medical proof. In other words, the doctor just wrote me a prescription for a wheelchair because I wanted it, not because I needed it.

    I find it quite suspicious that after fighting them for five years, they inform me that, since I’ve not worked in the past five years, I am now no longer qualified to receive disability based on my work history. In other words, I will be compensated like someone who never worked a day in my life – even though, over the 24 years that I worked, I payed in close to $350,000. They also state that I am no longer eligible for backpay for the previous five years I had spent fighting them. This same office kept my file on a bookshelf until it was (according to one of the secretaries who apparently was as fed up with the system as I was) “covered in dust and cobwebs”. They didn’t even have the decency to dust me off now and then. No wonder I was sneezing so much!

    I now, in the last month, have been diagnosed with Ehlers-Danlos syndrome, a genetic disorder that caused the collagen in the body to be faulty or to breakdown. The first thing the doctor said to me was that, “EDS patients normally show no signs of arthritis on their x-rays, so if you are showing signs of joint wear and narrowing then you would be considered disabled with EDS.” OMG, what a revelation!!!

    As far as going to church to help with the pain, maybe they would pray for me to feel well enough to actually get to church…and then they would find a way to get my wheelchair into the church.

    If I sound bitter, I’m really not…my sense of humor is just more sarcastic. I especially loved the rheumatologist who told me that I didn’t have joint disease but that me being able to bend my fingers backwards at 90-degree angles was a collagen disorder, but never mentioned that there was a syndrome with this and it was debilitating.

    I also loved the dermatologist who told me, when my hair started coming out in clumps at 19, that I had male pattern baldness.

    Okay, I’ve griped enough..but you guys started it!!

  • Noongsaao

    @Mela–

    Don’t know if you’ll see this or not. But I had a question for you. You said, “…I would rather risk an ‘addiction’ to my daily thryoid hormone…”. Really? May I ask what thyroid medication you’re on? I’ve been on several (hypothyroid), and from all of my research and all doctors I’ve talked to, no thyroid medications are addictive. It would be like saying that birth control is addictive. It’s just a replacement of a hormone that your body makes naturally.

    Anyway, just wanted to throw that out there. Hope everyone has a good day 🙂

  • Diane

    Wow! I feel like I’ve just found my brothers and sisters under the skin. I’ve lived with chronic pain since I was about 6 years old. Back then it was ‘growing pains’. When I was 13 it was juvenile rheumatoid arthritis, and treatment with anti-inflammatory meds that never helped. When I was 15 I dove into a swimming pool, and as I hit the water I was hit with my first migraine. It knocked me out cold and I nearly drowned. The migraines continued, once lasting 28 days straight. The theory then was that my hair was too thick and heavy, and getting it cut would stop the headaches. From then on it was a never-ending parade of doctors and tests that were inconclusive. The pain got worse and the migraines became a daily occurrence. I couldn’t take care of my house or my kids; kept going to doctors who each had a different diagnosis and each kept loading me up on narcotics. I never felt better, just drugged out. I lost count of how many doctors recommended psychiatric care. Depression was a given. I was sick and tired of being sick and tired. Finally my primary doctor diagnosed me with fibromyalgia and sent me to a rheumatologist, supposedly a specialist. I saw him once, where he told me that he thought fibromyalgia is a ‘trashcan diagnosis’, and if I’d get more excercise I’d feel better. I walked out and never saw him again. But I figured he was ignorant and needed educating. After being dismissed and misdiagnosed by doctors for so many years, I have learned to do my own research and to be my own medical advocate. I spent the next year or so printing out every medical research article and clinical trial results I could find, and every few weeks I would leave them at his office. It took me a year and a half, but I finally got an appointment at the Pain Clinic at Stanford Hospital. I saw two doctors there who went over all my medical records and ran some tests. Finally, I was sitting in an office with both doctors sitting across from me, and one of them leaned forward, put his hand on my knee, and said, “we believe you”. I burst into tears! It was such a relief to finally have my years of pain and disability finally validated. The only problem was, by the time I finally got my appointment at the pain clinic, it was 2 weeks before I was moving to Arizona. But the doctors wrote up a pain management plan with the medications and therapies I should go forward with for me to take to my next doctor. When I got to Arizona I found a doctor to follow my treatment plan, and I’ve been able to work for the past 8 years. That is a huge thing to me, after spending 13 years at home trying to take care of my kids when often I couldn’t even get out of bed. Being in Arizona has helped too. Living in California near the coast left me at the mercy of the weather. Barometric changes trigger migraines for me, as do hormones and certain foods, flickering light, loud noise, and certain smells. Most of those I can control, but I’m still at the mercy of weather and hormones. The weather in Arizona is more stable than it is at the coast, and while winter is still difficult, the rest of the year is much better for me. I’m 48 now, and I think I’m beginning menopause. I’m hoping that by the time I’m post-menopausal the hormonal migraines will go away. I’ve tried for years to get my doctors to give me a hysterectomy, but nobody will take out a healthy organ. Even though it would give me back 120 days a year. Go figure… Anyway, these days I take enough drugs to knock out a horse, but they allow me to function throughout the day and to work. And I need drugs to fall asleep and sleep through the night. I get really angry when someone says I’m addicted to my medications. Physically dependent, yes. I’ll go into withdrawal if I stop taking my antidepressants suddenly, just as I would if I suddently stopped taking morphine. If that’s their definition of addiction, why don’t they consider a diabetic addicted to insulin? I’m in pain every day, drugs or not. The drugs just make the pain manageable. But because there are no tests to prove what I have, and I don’t look sick, I face suspicion and doubt all the time. I don’t get high from my medications, and never have. I take them exactly as prescribed. And if I have to take a handful of pills every day to be able to function and work, that’s what I’ll do. As long as I can keep the pain at bay, I can keep going. It’s good to know I’m not alone on this journey. Thank you for sharing your stories.

  • Paula

    I have fibro and testing for other issues and have heard all of the above and then some. Including: How can you just sit home all the time? Don’t you want to get out and do something? Or the best one from a young man that worked for my husband. “Pain is mind over matter” then he was hospitalized for a kidney stone. I had to ask “So what happened to mind over matter?” I didn’t get much of an answer for that one. One other thing why do people ask how you are doing and then have to one up you. I swear I could tell them I coded once last week and they would have done it twice.”

  • Julie

    I have Fibro…

    “I don’t think I’d be able to work at all. How do you get so much done?” “Out of necessity” “Oh. Well, in any case, you were 5 mins late again today. You’re fired.”

    “I manage my pain just fine with prayer.”

    From Mom: “I have friends with Fibro and you act like you’re older than them. GET OVER IT!”

    “You couldn’t stand up when you got out of bed today? How did you make it to work? Oh, and your replacement is already in your cubicle. Maybe you’ll find a flexible schedule somewhere else. I hate to see you leave, you did the best work I’ve ever seen in this department.”

    “We’d hire you back if it weren’t for so and so” (who apparently doesn’t understand I have rights)…

    “If it hurts that much to stuff envelopes, why don’t you just go on disability?”

    OH! And I had a co-worker who insisted on calling my “CRIP” – aint that cute.

    Can you tell I’m trying with ALL MY MIGHT not to go on disability? I’ve been in the accounting field for 18 years and only about 6 of those years were not in temp jobs… Always fired for tardines – and ALWAYS told my work was impeccable, my productivity high…

  • Danielle

    ALL of you are so funny with your comments! LOL i really like the comment too ” all you need is a little sunshine and to get outdoors more!” ummmm yea ok I will remember that the next time i can crawl out of bed, drag myself to the door,and MAGICALLY POOF the sun will change my whole life!!!! whoopie! LOL I really like the “you look great!” comment I know i must look like a million bucks by now with me hearing that comment all the time. And Mostly “you don’t look sick!” LOL ummmmmm how does sick look?? should I walk around in a body cast? To all of you who are sick, find the humor in your life, it really does help your mentality 🙂

  • Valerie

    I am so glad to finally know that there are other people in this world who understand. Thank you Cindy for sharing this site. I don’t ever recall not feeling depressed, even as a child. I also can’t remember most of my childhood, and I have lost so many recent memories because of the ECT treatments, which helped for a little while. But that relearning my life part has been really hard. Well after 32 years of struggling I finally have a Diagnosis. Whoop te doo. Every day is a struggle, but I just put on my happy face and try not to let anyone in, it is too hard. All the you should try this and that, like you have said, gets to be pretty old- kinda like I feel, LOL. Again, Thank you everyone, you made a difference.

  • Debbie

    OMG…. I love all these comments!!! I am sure we all have heard it all. My husband insists that I must be making more of it than it really is. Really???? I have raised 4 kids and never needed him or anyone else to chauffer me around before. It must be because at 43 I am soooo old I need a caretaker just to go get groceries!!! Yeah, thats it. I no longer like to go out on my own and walk thru the mall (my favorite past time was always shopping!!! ). And, of course, there are always the people that say you do not NEED those pain meds. Oh really??? Gee, did you sleep well last nite? Nice and comfy? Because I cannot remember when the last time I slept thru the night and without pain!!!! My husband says all I do at night is moan in my sleep. Hmmmmm…. maybe thats because I am in pain EVEN in my sleep. People do not understand just how your own body betrays you like this!!!! I don’t even take a shower anymore if there is nobody home with me. I learned after almost passing out twice…… Now, since I am on disability, my company has stopped my health insurance (lucky me) and my doc will not refill any of my meds, which I can understand (she needs to do blood tests), but now what am I supposed to do?? OH, believe me, I have friends and family that have lots of ideas on how I should handle that….. “it’s beautiful outside now… sit outside for a little in the sun, you’ll feel better”. Hmmmm…. I could swear my doc said to avoid the sun!!! Oh well, back to the drawing board….. Thanks for the laughs….

  • So happy I found this site. I love the responses to the “helpful suggestions” sometimes I feel badly when I become impatient with suggestions, but I can usually tell if people are genuinely concerned and helpful…or just being nosy or trying to be a know it all.
    I struggle with feeling guilty or having to explain myself for not having energy to do things or avoiding situations that I know are going to cause pain and exhaustion. Without a sense of humor I don’t know where I’d be.

  • Cynthia Chapek

    yes, my favorite is “You just need more exercise, the experts say everyone needs 20 minutes of aerobic exercise a day, then maybe you’d have more energy” What part of limited resources do they not understand????

  • Mela

    OH! I’ve been getting the ‘you’ll get addicted’ line from my family for 15yrs….I’ve explained 760 times that I would rather risk an ‘addiction’ to my daily thryoid hormone than NOT take it and feel as sick as I did before I was diagnosed/started the medication! Unfortunately they don’t recall how sick I was because they refused to believe I felt ill…and I’m pretty sure I DID look sick back then! 😉

    [I’m STILL giggling from Victoria’s ‘reprimand’ 🙂 ]

  • Mela

    .”………now everyone go out, get a job and stop being a baby….”

    HAHAHAH!!!! Victoria you crack me up!!! Laughed out loud when I saw that!!!!

    I think everyone’s covered all the comments I get….esp the ‘you need some sun’ and ‘get some exercise’ beauties. Also, my flat is always untidy. My mum (being an Italian neat-freak) nags me for not keeping the place neat. I’m thinking of TAPING the comment “I wish I could but I’m EXHAUSTED and feel SICK!” so I can just play it to her and save my breath.

    I’ve been gushing blood every time I go to the toilet EVERY DAY for over a year now. I’ve undergone tests and am seeing a gastroenterologist regularly at the local hospital. They claim “there’s nothing wrong”. I wonder if they’d be so apathetic if they were experienced a bloodbath 1 to 4 times a day for such a long time. You would think it logical that I’d be fatigued from the iron deficiency (due to the bleeding).

    Thanks all for making me laugh….will stop ‘being a baby’ now lol

    mela

  • Jese

    I have so many things going on with my body it makes my head spin, all having to do with relentlessly severe chronic pain.
    One of the things I hear over and over is”If you would just GET UP, out of the chair and do something active, you’d feel 100% better!”

    And so many times I find myself wanting to say,”Excuse me, but I’m sitting in this chair because I feel horribly LOUSY and in a LOT of pain. If I get up to do “something active”, as you suggest, believe me, I’m going to feel 100% WORSE!”

  • Noongsaao

    I’m soo glad I found this site. I’ve been going to doctors since I was 12 complaining of different things, but mostly of just being exhausted. After 6 years, 2 states, and 2 countries of doctors, I got one of the greatest comments from a doctor: “You know, I think your problem is that you haven’t gone to church at all in the past year. You just need a closer relationship with God. You pain and fatigue is Him calling you back.” (Oh. And he followed me out into the waiting room while he was saying all of this, with other people there waiting. Totally violated all of my HIPAA rights.)

    Yeah. Right. Not 2 weeks later I was diagnosed with Hashimoto’s Thyroiditis. My replacement dosage is now nearly equivalent to people whose thyroids have been removed (less than 2 years later). Also have been diagnosed with CFS, FM, hypermobile joints, scoliosis, migraines, sacroiliitis, and Raynaud’s phenomenon. Right. All of this because I need to be closer to God. And like others, don’t get me wrong. I completely believe in the power of prayer and the importance of faith. But I do NOT believe God would ever bring this upon someone just to get them into church or praying more often. Much less in someone who is still only 21. This is no way to live life. I’m just so glad that I’ve found a community here that understands, and am actually a little sad that I didn’t find it sooner.

  • Lee

    Thank god this site had been sent to me.I have always used humor to get through some bad times in my life,but haven’t this time,because of all the not knowing !!Now I know I am not alone. A postive test for Lupus I had and was sent to a Rheumatoligst,only to be told” if you get your depression under control You may feel better..this said with only doing some weird exam by touching me all over..not at all comfortable.and seeing FM written on my chart.Never a word to tell me what fm was nor nothing said about the postive lupus test..only made another point as to me getting a bit more exercise!!..My lord,now why didn’t I think of that..as she knew how much pain I was in… I couldn’t even walk a block with my pup,nor stand more than 10 min.without feeling much pain! I went home very upset. I found some intresting articles where it said that some Dr’s think some anti immune dieases were of a psychiatric condition rather than a physical condition..I refuse to believe this,I did not ask for my life as I once knew it to be torn away from me.Also I found out that Dr’s that have a hard time diagnosing a patients condition call the diagnosis a wastebasket case…No friggin way would I allow any dr to blow me off like that,knowing that I had a postive lupus test,and no other tests done at the time. But still I did not call my internist ,just got into bed and isolated while my friends said all sorts of things.as I have seen mentioned above. Thank god for this site,I am now going to get a grip and call my internist,I will be my own advocate,as I know I am worthy of being treated with respect rather than being blowm off. All I want is my life back..knowing that my condition can not be cured but I will find ways and with sites like this learn to manage my illness
    thanks!!

  • Lee

    I am so glad that this site was sent to me!! Not only do I feel all alone …Coulld it be stress is pretty much what I heard from the Rheumatoligst I first saw..She made it clear to me that if “I got my depression under control”I would feel so much better.She said this only after she touched me all over (had no idea why) and no blood tests nothing else had been done when she so bluntly made this satatment!!.I have been told this sort of thinking comes when dr’s who thinks some anti immune disorders are a psychiatric condition rather than a physical condition. Which I happen not to believe.The beginning of the end I felt after this dr blew me off!!
    Oh how this site has helped. Get some exercise is yet something else that I was told again from the same dr… Sure exercise,why I never thought of that is beyond me,as I can’t stand for more than 15 or so minutes! So to say the least I went home and instead of calling my
    internist and telling him what had happened..I have been isolating and try to stay in bed as much as possible,
    Because of this site, I am now going to be my own advocate and make sure I am treated both emotionally and physically with the respect I am so worthy of.
    PS..people do get depressed when their life as they have always known it to be, in a flash had been torn away from them and anyone who can not understand that I do not want in my life!!

  • Gale

    Great thanks for the snappy comebacks to thoughtless comments. One of my classics is My mother-in-law “When are you just going to over this?” After a bad flare, hospital stay and learning to walk again I lost 50lbs and my mother says “But you really look so good” (on death doorstep) “What you need is a week on the beach in the sun in Hawaii” My hair falling out and “you really need to get a wig”. To the comment about the medications – Better living through chemistry Now I’m just living through chemistry. “Just stop taking those steriods your gaining weight again” Thanks for the Humor

  • Renee

    Someone’s quote, “My disabling chronic illness is more real than your imaginary medical expertise.”

  • maggie lee

    My daughter in law (who is newly qualified as a nurse) knows how to solve my disability quickly (failed back surgery) just walk a little every day soon you’ll be walking miles like you used to!! I wish I could, I don’t want to be in pain and not able to walk without being in pain. Don’t want to be in her ward!!!

  • Renee

    I have damage to my spinal cord causing nerve pain down both legs and cramping. My husband came home from a work out class and said, “Man, I know now how bad your legs feel cuz mine hurt from all those lunges!”

    Or how about people saying, “You shouldn’t take narcotics at your age, you’ll become addicted.” ROFL, I am dependent, not addicted, and I’ve got a whole big stack of MRIs and CT scans to prove I’ve got a bit of a problem! I guess I should wait on those narcs until I’m 90 and ready to die so I won’t have time to get addicted??? 🙂

    “But you had surgery, when are you coming back to work? I thought you’d be fixed?”

    “You just need to get out more and exercise, if you just strengthened your muscles and got more sun, you’d feel better.” Thanks, as soon as I can crawl into the shower, then get dressed, then lay down and rest from that, I’ll run right outside!

    And what about the dirty looks you get for using a handicapped parking tag? I use mine only when I need it, it’s like a reserve spoon for me. If I can park close and use a scooter inside(another reserve spoon), I might have enough spoons left to make a simple dinner for the family.

    Love you all, love that you all have a sense of humor. Finally, a site where I fit in.

  • Teresa Robinson

    One more thing…that should have said Social Security Disability…my mind said Social Security Disability but it left off the Disabilty part!!! lol I’m only 43 yrs old and I feel like I’m 93…most days I feel like I have been beaten with a baseball bat…:( Not fun…I hurt so bad all the time that I can’t even make it to church any more…I sure do miss it…:( Ok I think I’m done now! lol

  • Teresa Robinson

    I can relate to most of these too…especially the get up and move more…exercise…I tried going for morning walks with my neighbor before work (when i was workng…now on Social Security)…by the time we got back home I did not feel energized like I use to…I had to push myself to take a shower and by the time I got out of the shower I was so tired…all I wanted to do was lay down but no…had to get dressed and get to work…so wer stopped walking…I have FMS, arthritis every where…spine & neck problems…had total right knee replacement…pain is some better but it still hurts due to scar tissue build up…I’m a mess plain and simple…live at home with mom and dad…I do what I can to help but it’s never enough and according to dad I can’t do anything right so why should I even bother!!! LOL Glad I found this site…it made me laugh…THANKS!!!

  • Kaeleigh

    I get things like:
    “Oh, you should try [over-the-counter topical cream]” (for my psoriasis) – thanks, tried them all, the only thing that’s even MOSTLY helped has been injections of immune-suppressing medication.
    “It’s probably a vitamin deficiency/hormone imbalance” Really? Because I totally haven’t tried taking vitamins, and I never would have GUESSED that bipolar is caused by chemical imbalances in my brain.

  • Elizabeth

    Well, at first I laughed, have heard and still hear them all, but as I read through all the replies, I ended up in tears.
    Sad this illness really.
    NO we don’t get better.

  • victoria

    LOVE the comments.. this site is great..
    as for me.. well the sleepy making meds that I take at night DON”T help me sleep.. they turn me into a zombie for the day tho.. the painkillers that I have to take 4 times a day just to get out of bed and move.. well thats just for fun and the numbness/tingling in my extremities from nacrotics.. well I just like to get high, right… the surgeries on both knees and shoulders really help with daily activities.. not yet 50 and my son acts like I am about to be completely bedridden.. well heres the kicker… lying in bed HURTS TOO…..
    anyway.. had to add my dimes worth.. have you all bookmarked so I can come back…
    now everyone go out, get a job and stop being a baby…. lol

  • Jen

    Reading all your comments has brought a smile to my face on a day when I’m feeling quite down about my level of fatigue.

    I have Ankylosing Spondylitis and I think the best/worst comment I get is “is your back better yet?”
    NOOOOOO, it will never get better.
    I know a lot of people think they’re either being helpful or are genuinely concerned for your well being, but how many times do you answer ok, when asked how you are, just because it’s easier than saying how you really feel.

  • Tina

    Thank you….thank you! Humor helps most of the time.
    But when im having a bad day, my patience for those around me is very thin…I have started to avoid a lot of these people…and it gets lonely.
    And then there are those who think you are just trying to get “attention”.
    I like ” the sunshine” comment, i hear that one every time its sunny out….
    Loosing weight is another one i hear constantly! I thank my meds for that one….
    Cleaning house…Ha thats a joke!…Im lucky if i can get my kitchen cleaned daily…i always have to nap…just to calm down the pain.
    Remember “Life is short so blow bubbles!!!”

  • Kell-y

    This is one of my first times stopping by this site and it’s amazing… I’d only ever read the Spoon Theory before. I feel more connected and comfortable now, like I’m not the only crazy girl out there with fibro thinking I’m in pain when obviously I’m faking it…. obviously. What I got from my doctor was
    “Okay, well, we know you’re in pain, so what are you going to do about it?”

    I wasn’t sure how to answer that. I guess “But…. but… I kind of wanted YOU to do something about it.”
    Oh, well. More exercise! I guess that’s suggested a lot… it’s all she could think of. I have a new doctor now, but no new suggestions.

    Luck to you, Lady. Live well and in health and if you need anything… we’re here blogging in support! 🙂

    Magan – lol. That doctor… lol.

    Darlene – wowie, good job! I’m trying to walk every day and… yeah, I know how you feel. Naps are good. Naps with warm cats is better.

  • Darlene

    I had to read these and yes, I have been giggling and snickering and all that jazz. My favorite is “Maybe its your meds”…..um, no, all my drowsy-making meds are taken AT NIGHT so that I can hopefully sleep without pain and all night long. The other one? You should lose some weight. Gee, I WANTED to blow up to a number I never ever ever thought I would see? Let’s put YOU on oral, injectible and IV steroids for two years and see what happens to YOUR figure!!! And your kidneys! I am very very close to dialysis now and no, I don’t know what caused it….lolol. And like I told my pain management doctor at my last appointment, I am down 60 lbs. so far (yeah me), know I still have a long way to go (between 80-100 lbs or thereabouts; gotta love prednisone!) but am diligently working on it and I STILL hurt like I’ve been beaten at times, can’t do basic housework without my pain meds and sometimes still require a nap. Go figure.

  • Pammi

    Love all the comments, My GP said to me, considering how ill you are your quite healthy at the moment!
    Love the spoon theory, it will make it easier to explain RA too.

  • Sarah h

    My favourite and also the worst comment ever received was from the ‘Pain Management Consultant’ –

    “It used to be believed that fibro was all in the mind but now we know it isn’t. It is caused by something in the brain thinking you are in pain when you are not.”

    Needless to say I didn’t bother going back for more ‘treatment’ especially as the treatment suggested was to get more exercise.

    The second worst comment I received was from the epilepsy consultant, 5 mins into our first meeting –

    ” I don’t believe you have epilepsy, I think your behaviour is caused by some childhood trauma. You can manage your condition with deep breathing.”

    I didn’t bother to go back there either!

  • gailmom

    Oh, yes, I think we can all relate to this list! Have you tried….~sigh~ yes, I probably have, and if I haven’t, there is a reason.

    But honestly, I’d rather get suggestions (which at least acknowledge I’m ill) than dismissal.

    It’s hard enough to believe I have an invisible illness and am not just a “lazy excuse seeker” without other people echoing that very doubt at me on a regular basis.

    Thank you for the website, the articles and the newsletter. Much as I love what’s here, I LIVE for the comments and how connected they make me feel to other ‘invisible illness’ sufferers.

  • melissa

    Love it Mary, I love being told I just need to “suck it up and excersize” um sure, I couldn’t get out of bed this morning without help, but lets do some jumping jacks!

  • Clio

    “A healthier looking patient i’ve never seen!” A comment from a now ex-friend.

  • Sacredjinx

    Man, I am SO thrilled to have found this site. I’ll add in my 2 cents:
    From a neurologist after I got more frustrating news causing me to cry,” You know, for someone as colorful as you, tears are not becoming.” After survival of Pneumothorax, sepsis, coma, ARDS, & infarcted colon,” Consider yourself blessed. But we still don’t know what’s causing it. You’re an enigma.”
    And finally,”You mean your STILL sick?” Yes. 12 years later, it has not magically gone poof.

  • Erin

    LOL I hear a bunch of those all the time. I have chronic headache and get people who lower their voices then ask if it could be my period. I try to be poilte. But it’s hard because they don’t realize how insulting it is. I’ve been suffering for years, am disabled because of the pain but no, didn’t think to try that?!

  • Mary

    Another one is, “Maybe you just need to exercise.” Um… I can’t. The problem is getting advice from people who have never been sick. Well meaning as they might be, they too much for granted to know how to give helpful advice. It usually comes off as patronizing.

  • Mary

    I don’t know if recommending holistic options is so terribly bad. I work for a naturopath and when I offer advice to people with chronic illness, they tend to be really interested in any sort of information they can get their hands on. I have Chronic Fatigue Syndrome, Hashimoto’s thyroditis, and Adrenal fatigue and I certainly have benefited from holistic options.

    My favorite is that I’m just getting older. I stopped getting out of bed at the age of 24. It’s foolish to write it off as age!

  • Mona

    My favorite is when people (and doctors) say; “well, you just have to learn to live with it” Like I have a choice..

  • Tracie H

    Sooo true! and so funny! It’s like when I’m having a bad fibro day and my husband (who has a very physically demanding job and is 14 years my senior) comes in and says how much pain he’s in. I feel like saying, at least you earned your pain. Mine’s here for no apparent reason!
    Kudos to Stuch21 for trying to overcome her eating disorder. I hope you’re on the road to health! Keep on fighting.

  • Shauna

    How about the boss asking if I was doing a 10km run – when I told her I couldn’t go grocery shopping with out an asthma attack – she said – well maybe you could walk it…. this was 1 week post MAJOR asthma attacked caused by doing 30 minutes of walking… DOH!!
    And don’t forget – all you need in a little sunshine – that will make you feel SOOO much better…

  • Amanda

    I enjoy the ‘you’re just getting older!’ comment, yeah sure I am! I was diagnosed with fibro at 9, I’m now 16!

  • magan

    After telling my specialist my lovely list of dx he looked at me and said, “your mother should have sent you right back after you were born.” Chuckled and continued on with the exam.
    What!?

  • Christina

    My wife has had a severe chronic headache for 4 years… The best comment we have ever heard was from a friend we hadn’t seen in a while. She clearly ‘gets’ it because when we updated her, she got this look of deep concern with the glit of a smile in her eyes and said “wow! have you tried Tylenol?!” and then broke into laughter!
    We’ve both (i’ve got FM and some other stuff) heard so many of these and received so many newspaper clipping in the mail that it was really refreshing to have someone joke around with us about it…
    Christina

  • Maddie

    A friend refered me to this site, and I think it’s just wonderful. Especially the spoon theory. I’ve gotten just about all of these from the people in my life, in particular my mother.
    I did want to ssay, however, that for those of you who brush off other people’s comments about their symptoms and illnesses,you shouldn’t. Remember how you felt when you first started explaining your symtpoms to those around you. What if they too have an invisible illness? I belong to an online “support” group for persons with disabilites. Recently, there has been a bit of conflict over who is “really” sick and who is just faking. Remember, you don’t know what they’re going through.
    I’ve been treated this way by a “friend” who has fibromyalgia (I think). She told me I couldn’t possibly be feeling what she was feeling, that I couldn’t be as tired as she was. Turns out I’ve got my own diagnoses. So, don’t necessarily assume that they don’t know what you’re feeling.
    But, anyways, I just wanted to say that. Love this site. ^.^

  • Lady

    I understand your frustration; people are forever saying stupid things. I’m trying with all my might to recover from an eating disorder, and I can’t tell you how many times in a day people say things like:
    “Wow, you look great. Have you lost weight?”
    “I wish I could lose weight like you.”
    “You’re so lucky to be naturally thin.”
    “What diet are you on?”
    And so on. It makes me terribly sad, but I just do my best not to show it and move on. I can’t hold it against people who don’t know, or who don’t know better.
    The thing that really gets my goat is when people who DO know say things like:
    “Stop being so stubborn. Just eat! It’s not hard.”
    “You know, you’re killing yourself.”
    “Aren’t you a little old for this kind of attention-seeking behavior?”
    Anyway, I love reading your blog; I found it googling Crohne’s disease a while ago (Really, DON’T google your illness). Love and encouragement to everyone who’s struggling. Like the song says, “I gotta get through this, I gotta get through this. I’m gonna make it, gonna make it through.”

  • Stuch21

    I get the “you spend too much time sleeping thats your problem”…hmm i sleep like 8 hours a night if that how long do you sleep??? and “its your medication if you would just stop taking it you would be fine”…oh yea because doing nothing really worked for me before…oh wait thats why i went to the doctor!

←  Older Comments
Newer Comments  →