I am Sick, NOT Stupid.

 

Many years ago I heard a joke that was going around and it went like this.

A guy was going home from the auto mechanic and just as he was passing a psychiatric center, a wheel fell off his car. He stopped, surveyed the situation and realized that the mechanic must have been distracted and never put on the nuts for the last tire. In his frustration he yelled out, “Oh God, what am I going to do now!” A patient who was standing by the fence, observing the action shouted out, “take a nut from each of the other three wheels and bolt the tire back on. The drive then said, “That’s a good idea, why are you in the psychiatric center?” The patient answered, “I am here because I am sick…not stupid.”

Not-Stupid

(This joke is great on so many levels. I won’t even begin to go on a tangent defending how mental illness IS an illness and is medical and has nothing to do with our intelligence, but I will save that rant for another day.)

The reason this joke came to mind is when I was in the hospital recovering from a stroke, the staff doctor came in and asked questions. When he asked as to the medicines I was taking, he practically looked right through me and focused on my father’s faced and asked him.  He directed it to my father who was visiting! I couldn’t believe what I was seeing.  I started to answer with name, amount, time taken and my various side effects and his eyes widened. He again turned to my father and then asked him another medical question meant for me. My father pointed to me and I answered, again in detail. The third time that doctor again started to ask my father a question meant for me. I politely stopped him and stated that I was the patient not my father and I know more about my aliment than my father does. My Lupus may have effected my joints, my fatigue, or my skin …but last I checked it did not give me  a “smaller” brain.

Sometimes people treat me as if I can’t take care of myself and while there are times I need help, I have a life of my own, making my own decisions and my own opinions. Talk to me not about me, if you want an answer ask me and then respect my opinion. I have a chronic sickness, I am not chronically stupid. It’s still me, in here stuck in this sick body.

 

 

Author: Christine Miserandino

Christine Miserandino is the founder of butyoudontlooksick.com. She has won numerous awards for her writing. She has been featured in newspapers, magazines and television. She was a guest expert for Alliance Health, LupusConnect.com and community TV host for WebMD.com. She prides herself on being a patient advocate, Online Influencer, and health brand ambassador but her favorite role is that of a mommy. You can find her at @bydls on twitter or on facebook. 

 

©2024butyoudontlooksick.com
  • Allison Thompson

    I have diseases other than lupus, but I have the same experience. I do still think the doctor should always look to the patient though. By immediately looking to someone else, it disrespects the patient as its if they aren’t even there. Ima make a comparison:
    If a small group of people who are deaf and a single person who can hear sit in a restaurant, often times the waiter will go only to the hearing person. I know they do it because they’re nervous, but many deaf people can actually read lips and speak. The waiter looking only at the hearing person while taking orders is offensive because it is based on assumptions.
    So yeah. Its really hard being in a doctor office when you suddenly lost all memory of your medications or what they do, etc. Even though it was embarassing, I’m glad the nurse taking my med list went to me before my mom for each item.

  • Randy

    I know! With some illnesses, we manage our symptoms for years (or decades). We become our own caregivers if we want to be self-reliant and have decent lives. Sometimes that breaks down and we need help. But like you say, we’re sick, not stupid.

    With my chronic pain, some doctors treat me with competence, others not so much. Some just treat a tiny part of the problem and then pawn me off to another “specialist.” In the meantime, I still have no resolution. And . . . everything . . . . takes . . . . time. . . . . Each doctor seems to have a waiting list months out.

    Well, now I’m just whining. Not a bad thing to do once in a while. But back to the point, yes, some doctors are quite condescending. Others are so concerned about the bottom line, they hardly take the time to explain anything. Others actually care and discuss my illness with me. If they are competent, these are the keepers. Others aren’t competent enough to heal a teddy bear. Gotta love ’em. Or not.

    In the meantime, I hurt!!!! My life and my loved ones’ lives are altered by this thing I’ll call a parasite that is with me 24/7/365.

  • ICEPACKMAC

    My brother-in-law has the same thing. I was watching a reality show NYER. A patient came in with symptoms “vomiting, diarrhea, & urinating suddenly. Had it for 4 months, couldn’t eat it wouldn’t stay down. Even apple sauce or water came right up or out. A test showed the bottom of esophagus narrowed considerably so food couldn’t get to the stomach. It doesn’t sound exactly like your friend but close. Minor surgery opened the part & he was finr.

  • Cynthia Lynn Boren

    I have a friend who has been sick a little over a month now & all the endoscopy & tests are coming back negative. Can’t find anything wrong. She quit going to work because she would all of a sudden have to puke, and while puking she urinates & has a bowel movement all at the same time. She is a eye tech in a eye clinic & she puked & peed on the floor in front of people. But can’t find any reason for it. She gets heart burn at times, but doesn’t really affect her appetite. So I’m trying to find people that might have some of these symptoms & can give suggestions on what to look for next. Her job could be in jeopardy if a reason isn’t found soon. She has a pain like behind bottom ribs on left side, but Dr.’s can’t find a reason. She is about 70 lbs. over weight. Any suggestions?

  • Julie T

    I do not have lupus but have many other invisible illnesses and I cannot remember simple words often, much less dosage amounts and all the names of my meds. I would still have been offended if the dr didn’t first try to get an answer from me.

  • Kalie

    Not looking sick makes it difficult for people to believe you are. This is very difficult to deal with. I have hydrocephallus. Too much water on the brain. This causes headaches and balance and gait problems.

  • Afrodiseum

    Interesting. And here I thought cortex surface area was involved. Ah well.

  • Andrew D.

    Small point: The number of fissures in the brain isn’t correlated with intelligence. (They’re called sulci; meninges are membranes that enclose the brain.) Otherwise sheep would be the masters of the universe. Size, true, is not thought relevant.

  • Afrodiseum

    Indeed, it is the number of meninges in the cerebral cortex of the brain that determines intelligence. The more crags and valleys on te surface of the brain, the more intelligence.

    Still, as a conversational aspect, though the small brain theory is erroneous, it is a common reference in terms of conferring understanding. You shouldn’t take it personally. One day that small brain nonsense will be wiped out.

  • Afrodiseum

    I’ll be honest, I am willing to bet that had more to do with your gender than your illness. In spite of the fact there there are literally hundreds of brilliant women doctors, nurses, and medical technicians, female patients are seen as not being smart enough to deal with the complexities of medicine. I am a male, and I have seen this sort of thing happen first hand.

  • Lily

    During a recent MRI scan it was discovered that part of my brain is ”smaller” than it should be but in no way does this affect my cognitive function.You make the mistake of assuming that a smaller brain leads to stupidity….I find your assumption offensive!

  • Margaret Yakoda

    I am sorry the doctor disrespected you.
    My husband has a progressive dementia, and I am his caregiver. What that doctor did to you is just as inappropriate as it would have been if your father was your caregiver and the doctor only looked to you for answers. What he should have done – and clearly you already know this – is look to you for answers first, and only if you couldn’t answer should he have looked to your father.
    In the case of a patient with dementia, it’s too easy to overspeak the patient. Because they have dementia. But having dementia doesn’t mean the person is stupid. And what they have to say is still important. The caregiver is there to help. Not take over.
    It is sad your doctor didn’t understand that.

  • Joan W from West Chester Pa

    My lupus must be affecting my brain more than yours. Many times I cannot even find words to answer simple questions, or to let doctor know the troubles I’m having. I get confused by seemingly simple thoughts or decisions, and become frustrated…and isolated, and then I shut down.
    You don’t need anyone to help you at your doctor visit yet they are
    there. I don’t have anyone who can come to the doctor with me, …but I
    sure could use some one.
    Doctors know this happens, and maybe see it frequent enough and wrongly approach visits like this. Your doctor may have even assumed your dad is there for that reason.

  • !!! I Sarah Post This Testimony Coz My Husband Is Back Thanks To Dr.Ukaka

    My name is Sarah am from Texas, am a woman who love and cherish my husband more than any other thing you can imagine on earth continent. My husband was so lovely and caring after 3years of marriage he was seriously ill and the doctor confirm and said he has a kidney infection that he needed a kidney donor, that was how I start searching for a good Samaritan who can help,doctor has given me a periodic hour that he will live just 26hours left, that was how I ask the doctor if I can be of help to my husband that was how he carried out the text,the confirming was successful, I was now having this taught that since 3 years now we got married I have not be able to get pregnant can I be able to get bring again? That was the question I ask the doctor, he never answer his response was did you want to lost your husband? I immediately reply no I can’t afford to loose him. After the operation my husband came back to live and was healthy I was also ok with the instruction given to me by the doctor, after 3months my husband came home with another lady telling me, that is our new wife that will give us kids and take care of us, that was how I was confused and started crying all day, that was how my husband ran away with his new wife cluaralle. Since then I was confuse don’t no what to do that was how I went back to the doctor and tell him everything, he told me that, this is not just an ordinary it must be a spiritual problem that was how he gave me this email ([email protected]) that I should tell her all my problem that she can help that was how i contacted her and I do as instructed. After 3days and I have done what she ask me to do, my husband start searching for me and went back to the doctor, that was how we well settle she also told me not to worry that I will get pregnant, this month making it the fifth Month I contacted her am now 3months pregnant. These great spell cater is a great man, if you are any kind of problem you can contact him here on his email ([email protected]) website address: freedomlovespelltemple.yolasite.com

  • !!! I Sarah Post This Testimony Coz My Husband Is Back Thanks To Dr.Ukaka

    My name is Sarah am from Texas, am a woman who love and cherish my husband more than any other thing you can imagine on earth continent. My husband was so lovely and caring after 3years of marriage he was seriously ill and the doctor confirm and said he has a kidney infection that he needed a kidney donor, that was how I start searching for a good Samaritan who can help,doctor has given me a periodic hour that he will live just 26hours left, that was how I ask the doctor if I can be of help to my husband that was how he carried out the text,the confirming was successful, I was now having this taught that since 3 years now we got married I have not be able to get pregnant can I be able to get bring again? That was the question I ask the doctor, he never answer his response was did you want to lost your husband? I immediately reply no I can’t afford to loose him. After the operation my husband came back to live and was healthy I was also ok with the instruction given to me by the doctor, after 3months my husband came home with another lady telling me, that is our new wife that will give us kids and take care of us, that was how I was confused and started crying all day, that was how my husband ran away with his new wife cluaralle. Since then I was confuse don’t no what to do that was how I went back to the doctor and tell him everything, he told me that, this is not just an ordinary it must be a spiritual problem that was how he gave me this email ([email protected]) that I should tell her all my problem that she can help that was how i contacted her and I do as instructed. After 3days and I have done what she ask me to do, my husband start searching for me and went back to the doctor, that was how we well settle she also told me not to worry that I will get pregnant, this month making it the fifth Month I contacted her am now 3months pregnant. These great spell cater is a great man, if you are any kind of problem you can contact him here on his email ([email protected]) website address: freedomlovespelltemple.yolasite.com ,,..

  • Murugi Nyagah

    Well said Christine! So annoying…

  • bfw001

    When I saw this Rheum for the first time for a specialist app’t, my sister came for moral support, and he asked her all the questions, too (to the point of interrupting me when I would try to answer), until she explained that I know more than she does and am perfectly capable of answering. I’ve seen and and heard of this happening so often with friends and family, it makes me think that they need to update the “bedside manner” curriculum in med schools. I have not been back to that Rheum.

  • Cambria Lynn Jenkins

    That is one of the most annoying things I get from doctors and nurses. I have autism, and people say “But you don’t look autistic!” or ask my mother questions.

  • gill

    My daughter posted the spoons theory on her Facebook page which I read today. She has MS..and it does suck because to others she doesn’t look sick and every day she has to try and hang on to as many spoons as she can. She NEVER complains despite being in pain and ensures my grandson never misses out on anything because of her illness. I love and admire her and am proud of her courage and of her determined attitude and at how selfless she is as she declares she’s fortunate as there are others worse off than her. I wish I had her bravery. This theory explains perfectly exactly how all sufferers deal with life and live with illness on a daily basis. I was very moved by it.

  • Anne

    So true. I have MS, APS, Lupus and Pernicious anaemia. I had a stroke aged 34 but this was mis diagnosed by my local A&E as I was too ‘young’. So I had no rehab. As a result I developed a movement disorder and got sent to a Psychiatrist! Fortunately, he was wonderful and after four hours of talking he said he did not need to see me again but that he would arrange for the neuro rehab I should have been given in the beginning.
    I was also, once admitted to hospital as I had developed PE’S on both lungs. This was a life and death situation. Anyway, upon my discharge the Nurse read out my medications. I had been, without my knowledge or consent put on high dose antidepressants! I asked why? The answer? “Oh, the Dr thought you seemed a bit down”.

  • annoyed

    Yes indeed. My husband is blind. When we go shopping, even if he asks the question, mostly the folks to whom the question is asked turn to me with their answer. I have been known to stare vacantly at the ceiling when they do this, or wander off, or gaze pointedly at my husband , or if I am in a bad mood snarl at them that he is the one who wants to know, more or less forcing them to address him. Hubby says the handy part about being blind is he usually does not notice rude people. : )

  • JennLovesPitbulls

    Thank you for this. All of it- the spoon theory, the “But You Don’t Look Sick” sites and your personal experiences. I know too many people with invisible illnesses, from lupus to cancer, PTSD, anxiety, etc. It’s frustrating and can be so lonely , constantly misunderstood. All the while people see someone who moves ok, seems to function normally, and I still have an extremely hard time “explaining” that I have PTSD- what that means in my case, and how often I try to no avail. Thank you so very much for using some of your spoons to help others. Bless you ❤

  • Michelle

    I also do not look sick. People assume that because I smile and laugh, all is well. I’m hear to tell ya, my smile and laughter is for YOUR benefit (yes laughter is wonderful for ailments) … if I showed you every hurt I have …. I don’t think many would hang around for that.

  • This reminds me of the Black Eyed Peas story about their hit song, “Let’s get it started.” Apparently, at the beginning of the set at a concert, they spied several people in wheelchairs in the very front. The song was originally titled, “Let’s Get Retarded.” So they changed it to, “Let’s Get it Started,” in order to not offend the people in the wheelchairs.

    That’s stupid on so many levels.

  • Very well said. Despite not being able to remember things because of my short-term memory issues and brain fog, I do know what medicine I am taking, which ones make me extremely ill, etc.

  • Julie

    Yes! I’ve had some brain fog, so maybe I don’t always express myself very well, and maybe sometimes I forget things, but I still know more about my health situation than anyone else (including my doctors) and I expect to be respected. Well said!

  • Tony Turtle

    So true on so many levels! I hate it when people say to me that Osteoarthritis doesn’t cause pain and fatigue. As if!!!

  • Beth Elizabeth Ann Worley

    I just love when I go to see a doctor and they treat me like I’m stupid… and in reality, I know more about my illness than most of them do! My first neurologist treated me like I was the dumbest being in the world, mainly because I was a woman and in his society they are looked down upon… so any time I tried to suggest anything I had read about he acted like I was talking jibberish, until my next visit and then he’d suggest it like I hadn’t ever mentioned it at my last visit. I finally had enough of his attitude and changed to a much better neurologist! He treats me like a normal person, and actually listens to my suggestions, changing my meds to what I want if it’s something that might actually help, and if it won’t, he’ll tell me why and which research told him why it wouldn’t work! If he was twenty years younger I’d want to marry the man…

  • You are brilliant as always Christine! You express how many of us feel, what we go through, and the clichés people say to us. Then you put it all together so eloquently.

  • gneely

    Yea, and not lazy either. I find about the time a Dr starts treating me this way, they have hit the wall. They feel they have done everything they know to do. They have already dismissed us mentality. The theory is. When you run out of options, immagination , or courage, tell them they are crazy then its not your problem anymore.

  • Cheryl

    Definitely well said. It amazes me how even professionals make judgments about us.

  • Kristina S.

    Well said!! I remember doctors and even family doing that to my mom after she had her stroke. They talked about her as though she wasn’t even in the room! Even though she was dealing with dementia from the stroke, she hated it when people talked about her in this manner. It’s insulting, demeaning, and incredibly rude! I like how you phrased that you “have a chronic illness. [You are ] not chronically stupid.” I’m definitely sharing this one.

  • Katie Z

    Exactly! Medical professionals look to my husband for answers *all* the time. It drives me nuts. They seem so surprised when I can not only answer their questions, but then ask intelligent ones in return. By the end of my appointments I get asked if I’m a nurse all the time (why couldn’t I be a doctor?). The truth is that I’ve been taking charge of my health for so long now that I *have* to know a lot about it. There have been so many times when the professionals have made mistakes that could have had serious consequences if I hadn’t known enough to stop them.

    On the other hand, why do sleep doctors ask me if I snore? I am asleep; how would I know?! That’s the only question I can think of that I’m not qualified to answer about my health 🙂

  • amanda agee

    That was good, thanks for sharing and good story. Sometimes It make me feel stupid, because of the cognitive thinking and I often wonder if others think I am not capable of doing something or can`t think straight..

  • Lina
  • Cathy Chester

    Exactly. I tell people this all the time. MS doesn’t make us stupid – we just don’t fell well! When my dad was in rehab after a stroke, the nurses would ignore him and speak over him. I would tell them to stop, look at him, and ask him their questions. Even though his speech was slow, his mind was totally intact. This was a great post!

  • Pam Fisher

    This is an incredible post, and so appropriate! I totally understand what you are saying. Some people look at me in disbelief, some just treat me like it’s affected my brain (not yet) 🙂

  • Tonya

    I love this! I get so mad when people see me in a wheel chair and I ask a question and they look at my husband to answer or when I get these you are just lazy looks with head shaking when I use the mobile carts in shopping centers. grrrr I am disabled get over it.