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
  • Susan Zipf

    I’m am only recently ill, but we went through this with my husband. He had advanced neuropathy for almost 10 years, and insisted on working, though the doctors had urged him to file for disability. When our twins were 6 weeks old, he began having strokes. Almost immediately there was no chance of him returning to work. Within a year, we had lost our home and had to move into public housing. We moved half-way across the state.

    The one time my parents came to visit (in the past 7 years we’ve been here – once), my dad made a comment about if my husband were a man he’d get off his lazy a$$ and get a job.

    That’s when we let them know that comments like that were why we had moved so far away, and will never go back for good.

    Now, I’m dealing with all this, too. I have PTSD from the surgery (C-section), plus having newborn twins, plus husband getting very sick; I also have CFS and fibromyalgia, and very painful arthritis in my hips.

  • Kitten_Blueeyes

    My ‘almost in-laws’ have no real understanding of mental illness because they’ve never dealt with it.  A family member has an ASD but they just ‘humour’ her and so she never learns that the way she behaves can be very offensive. 

     I have suffered from clinical depression and anxiety for many years, since childhood in fact.  I also have suspected dyspraxia and Asperger’s and have found doctors and other health practitioners either want to help but don’t know how, or in some cases, are downright unhelpful, patronizing, and even rude. 

    My ‘almost in-laws’ don’t realize how ill I truly am.  While I may have few visible symptoms, I have days where just getting up and in the shower is a victory.  They cannot grasp that, they see someone who ‘doesn’t look sick’ and can’t understand why I can’t get a job.  I’ve been at screaming point, but my partner is very close to his family so I’m stuck with not wanting tp upset him – he does understand, but doesn’t know any more than I do how to explain it.  I don’t really want to upset them either; they are nice people, just clueless.  At the same time though, it makes family visits stressful at best. 

  • Leslie

    I have SLE, JRA, UC and Fibro.  All are “invisible”.  I also have 2 knee replacements, and am only 51 years old.  When I asked my Dr. for a handicapped license plate application, she said “Finally, I have been hoping that you would ask for one!!”; unfortunately, the public is not as accepting.  I get dirty looks, comments, and notes left on my car every time I  use a handicap space.  Initially I avoided using the spaces, but eventually, I realized that I was only hurting myself by letting people with small minds affect my behavior and my life. 

    I also fired a Dr. once because I heard him say to a Medical Student “she THINKS she has Lupus, but all her test results are negative, so it’s just a bunch of nonsense”.  I walked out of his office that day and never returned. 

  • Tmpad52

    I recently got disability,after 5 years,Thank God 🙂 due to my  invisible disability. Everyone said I didn’t look sick, but they don’t have to live in this body. I have a number of problems including a mental disorder, it cost me a marriage, a job and social stigma .

  • Naomi Spellman

    Don’t lose hope. You learn who your friends are when you: become sick, have kids, fail at something. What is important is not the friends you don’t have (they were never really your friends). What is important is the friends you Do have. That includes new ones that DO understand what it means to suffer with this type of silent disease. You have to change your understanding of life – think of it this way: you come to know the truth when you become sick. Everything else was false (not what it seemed).

  • Naomi Spellman

    Pain and exhaustion is increased whenever you have depression or any neurologic condition. Have you tried seeing a acupuncturist? Find one with a great reputation. They can help tremendously with pain and fatigue, even with inflammation.

  • Naomi Spellman

    Yes many doctors refused to treat me because I didn’t “look” sick. One ENT doctor at Kaiser accused me of causing creating my vertigo and neurologic problem myself – she actually wrote on my medical record that I had “Q-Tip trauma” she claimed I damaged my inner ear by myself using q-tips!

  • LittleBird

    I am frequently frustrated by the assumption that my age and lack of visible physical problems means I must be at the peak of physical well being. I’m not. “You’re young, of course you can do it.” I don’t tend to publicize that at 25 I have had fibromyalgia and CFS for quite some time now, so I want to be angry but I don’t feel like I have that right since I haven’t told them. I remember when doctors first started tossing the word Fibromyalgia around, a few people would laughingly say I was too young. That was… unhelpful of them. I usually just didn’t waste my time with them; but they were people I could make that choice with.

    I used to get in brief spats with my dad because he would (with all good intent) insist that if I would just exercise I’d have so much more energy afterwards like he did. I would try to explain that I had in the past and it would just wipe me out, but he couldn’t seem to get past the reality of his experience. If I would just TRY it, as if I hadn’t just stated that I HAD tried it. Regularly. Until I couldn’t anymore because it exhausted me. They were brief because I would leave in frustration pretty quickly or change the subject.

    The good news is that eventually he did accept my explanation that my body simply didn’t work the way it ought to, as his did. No it didn’t make any logical sense, but that was the reality of my poor health. I’m also pretty sure my mom eventually told him on the side that regardless of whether he understood could he please accept that I disagreed with his opinion and pushing the issue was only damaging our relationship. Harra, I hope your parents eventually are able to at least respect that this is how you feel regardless of whether it seems that way to them, and that someday they will be able to empathize and support you better.

  • Guest

    It may vary from state to state, but in the state I’m from you don’t need to be on ssi to be eligible for hc parking.  You do need a doctor or chiropractor (or whatever other medical professional may be authorized in your state by the dept of transportation) to sign off that you meet the hc parking criteria.  I do have a hc placard, but also “don’t look sick.”   Just passing this along because the hc placard can  help so much…

  • I have ‘Not-Lupus’ (I’ve had 3 positive ANA tests and have all the ‘signs’ but no formal diagnosis) along with something else neuro-muscular that we’re not sure what it is (just that it causes a burning sensation in all my muscles and nerves), arthritis and RLS.  My immune system is so weak that I avoid going out in public due to fear of becoming sick from something random that no one else would catch but I don’t look sick most days and I’ve gotten everything from laughed at to yelled at and called a faker.  Most of the time I just walk away though when it comes from loved ones, that’s not an option and it breaks my heart each time

  • Ettina

    I have autism, PTSD, asthma and hypermobility. I’ve gotten negative reactions for acting rude when I had no intention of being rude (really, I think people should be able to tell the difference between rudeness that is clearly intentional and rudeness that could just be poor social skills). I’ve gotten negative reactions in karate class for spontaneously falling when in positions most people can hold without falling (my knees tend to buckle, and autism affects my sense of balance) and for continuing to make mistakes longer because I have difficulty learning new motor skills. (They’re a lot more understanding of the difficulties my fat, middle-aged father has with karate.) I’ve gotten negative reactions for overreacting about things that most people don’t mind, which remind me of my traumatic experiences or else involve something that is especially unpleasant for autistic people (sensory issues and dislike of change).

    Fortunately, my immediate family is very understanding.

  • Divacor

    Yes I have by my Mother, some of my siblings & my Mother in law & many others. I didnt want do disrespect my elders but I have to explain sometimes they just dont know everything about everydamnthing it just really hurts coming from Family I can see others not knowing and or understanding but not fam who’s suppose to be the “SUPPORT SYSTEM” at times I just wish it was all over I’ve snapped on a couple of folks because of them knowing & still acting as if its nothing just a minor cold or something, I hate having to explain myself to anyone let alone having to “PROVE” what the problem or my problem is if I told you thats what it is. Oh thats what the Doctor said, how come you still have to ask, “are you sure”, like WTF SERIOUSLY you asked ME, I told YOU about ME what I know about ME! Do you get it now?, GEESH! What is wrong with people, You know of course besides the obvious (STUPID) ?….

  • Harra

    Yes, constantly, actually. Mainly by my own parents. (“Harra, you’re nineteen years old, you’re too young to need a cane to walk!” “If you just exercised more, you wouldn’t be in such pain all the time!” “Stop faking your limp.”)

    Then there are the people at school, who tend to grab my cane, and examine it without asking.

    For the record, I’ve got a bad leg from a fall back when I was fifteen. Other than the cane, I look like a normal, nineteen year old girl. Most people seem to think it’s impossible for someone my age to require assistance with walking.

  • Deb

    I have many of the same health problems and some others you did not mention.  I totally understand.  It sounds like you have a supportive husband.  I would listen to him, and ignore the other comments. 

  • I have fibromyalgia, rheumatoid arthritis, osteoarthritis, diabetes, asthma and other health problems.

    I have been told I do nothing,leaving it all to my husband, and just ‘lie around all day.’  Also my steroids I take are obviously not working or I would be fit and healthy like athletes who take steroids and they are strong. I should just stop all my medications and take cannabis! Really helpful! But it has made me push, push, push myself to do more than I can really cope with. My husband is not happy about these comments and says, NO! You can’t do it I have to pick up the pieces if you do too much. I use all my spoons too quickly, borrow from the next day and run out by the end of the week. Because RA, fibromyalgia etc are basically ‘hidden’ illnesses  I suppose I look OK but inside I am falling apart physically and emotionally.

  • Kucky1222

    The wording I try to use is non-accusatory, appreciative of every thing that has gone right, and speak clearly and politely. I do this when writing Vice Presidents of huge hospitals, The Board of Medicine, as well as family members. I can’t say that it works, but I can say it feels a lot better than getting angry, pointing fingers, and undermining your own credibility by sounding unstable. I speak differently in forums and chat, of course, but when I am dealing with medical professionals and institutions, I try to edit out subjective content and stick to the facts, laws, and their own policies that I feel are lacking. You’d be surprised how little some people in the medical field care about your feelings, but it’s a very different story when they are worried when actual ethics, laws, and policies are being broken.

  • Kucky1222

    as for how i’ve handled things, i have overused the Ombudsman service and even been treated bad by one of them – but i called her supervisor. i’ve called everyone’s supervisors from my insurance company to my medical supply companies. it works out sometimes, but others, as you can notice from my tone in my other posts.. causes me much more stress that i can handle even on a good day, i’m in therapy, and i’ve tried ad nauseum to talk to my family about how i’m different and could really use some extra leeway, compassion, or whatever you call it. yet here i am, still alone with a body full of pains, wounds and infections, and no more patience for begging medical professionals to do their jobs

  • Kucky1222

    i was a caregiver once, and i never treated an abusive, “crazy” or sad patient with disrespect because of their actions. I worked with alzheimer’s patients, mentally and physically handicapped individuals, and patients that recently had a major illness or surgery. i don’t know how anyone could be mad at a sick person for the way they react to things because of what they’re going thru. some were hateful, violent, and insulting – but i was their caregiver, there to make them feel better and help with their needs. i get angry because i know people like that exist and would do the same for me, i just haven’t met them yet, and i have no idea how to find care like that for myself when i’m currently sleeping 20hrs a day due to massive infections & recent tweaking of my anxiety medicine 🙁 even my doctors don’t understand why i can’t just get up and take care of things myself, even when my medicines’ side effects clearly state confusion, sedation, and inability to concentrate as common. aside from the fatigue from my illness, and again, the multiple systemic infections. the infections only get bad like this when not taken care of immediately… but who was going to do that while i slept for a week straight? my 7 days per week nursing care hasn’t even followed thru and it’s been almost 2 weeks since the first signs of infection. feeling uncomfortable because of my condition is an understatement. i feel helpless, alone, and scared all the time, and half of the time when i try to take care of things myself, i get a bunch of hassle and headache just trying to say i need help because i feel i’m never taken seriously until something REALLY bad happens. I’m sick of really bad things happening then learning to cope all over again once the worst is over. sorry for the rant. i am just really, really worn down and very depressed

  • Kucky1222

    when i cry, i’m being a baby. when i ask for help, i’m an adult that shouldn’t need help with daily tasks. when i get upset, i’m being a b*itch, and when it gets too much and i want to shut everyone out for a bit, i’m being irrational & get punished with refusals to give me rides to appts or call doctors on my behalf, or even pick up my prescriptions. this is hell. i wish someone would just treat me like i have a serious medical condition and emotional repercussions from it, rather than a petulant child that wants to boss everyone around for sheer enjoyment, that, i’m afraid, will never happen until they find a cure for ignorance and apathy towards invisible illnesses. i desperately need help without the emotional manipulation and vindictiveness that has come along with it the whole time. i need a trusted friend,  family member, or an advocate that can help me through this without psychologically harming me in the process, or withholding medical services when they feel i have “an attitude”

  • Kucky1222

    I was told  I’m not a “real patient” at 30 years old after a recent proctectomy, life threatening infection, and ileostomy surgery. i was accused of “gallavanting” in the hospital courtyard when i wasn’t able to sleep & took a long walk, after being denied my sleeping medicine. this affected my home nursing care upon release, becasue “people like me don’t get that much care.” i also get treated like i want to party all the time and get away with as much irresponsibility as possible, because i am young and therefore always up to no good

  • Lauren

    I
    wrote this story to help my friends and family understand what I go through
    as a person with Bi-polar disorder.The Well OF Life:

    A Bi-Polar Story

     

    Once upon a time there was a
    magical well called The Well of Life. 
    This well contained all the material needs of this world.  The well provided these needs, for a week, to
    any family that could take two full buckets of its magical waters home with
    them.  The well was located in a valley,
    surrounded by gently rolling hills.  Two
    families lived on the eastern side of these hills. The names of the families
    were:

    The Normies and the Bi-Polars

     

    The Normies and the Bi-Polars seemed very similar at first glance. The
    families each had a mommy, a daddy, and a son. That is where the similarities
    ended. Each family set off for the well on Monday. The Normies set off bright
    and early and started their trip up a gentle path with little to block their
    way. The Bi-Polars tried to set off early, but they didn’t sleep very well and
    had a hard time getting out of bed to face yet another day.  The hill that was so gentle for the Normies changed
    completely as soon as the Bi-Polars set foot on it.  The gentle grade became steep, and rocks
    sprung up to stub toes and trip heavy feet making the trip a bit more difficult
    for the Bi-Polar family.

               

     This
    is how a relatively normal day can feel for me when my Bi-Polar goes
    unmedicated.

     

    The Normies soon make it to the well and fill their buckets as the
    Bi-Polars continue to struggle up the hill. The Normies openly disparage the
    Bi-Polars on their way back, telling the Bi-Polars how lazy they must be.  The Bi-Polars finally make it to the well and
    fill their buckets, but when they turn back to the hill it has changed once
    more.  The gentle hill is now even
    steeper and covered in thorns.  Biting
    insects buzz angrily on the slope, daring the Bi-Polars to make the climb.  The hill is their only way back home, so the
    Bi-Polars must grit their teeth and suffer over the hill, though sometimes they
    just cannot do so, and collapse in tears, today they brave the hill.  They start their journey through the thorns,
    getting bitten and scratched along the way. 
    Their buckets become tangled in the thorns, and often they lose half the
    water they have collected.  They do make
    it to the top eventually spirits broken and in tears.

       This is how a depressive day can feel for me, when there is no joy in accomplishments and even the simplest task can be overwhelming 

    The hill changes once more and is now covered in beautiful and sweet
    smelling flowers.  The insects are gone
    and the Bi-Polars feel instantly uplifted and euphoric.  They feel as if everything is now right in
    the world and nothing could ever go wrong. 
    The family starts running here and there down the hill among the
    flowers.  The buckets are all but
    forgotten as they joyously stop here to sniff a flower or there to make a daisy
    chain.  The memory of the time before is
    not forgotten, however, and tempers run high and hot.  They snap at each other constantly even as
    they have fun, laughing and smiling together. 
    The Bi-Polars eventually make it home, long after the Normies are safe
    in their beds. Their Pails now contain only enough for a day, if that, due to
    their reckless behavior.

    This
    is how a manic day feels to me, when a short temper, reckless and impulsive
    BEHAVIOR and racing thoughts occur.

                The
    Bi-Polars must now repeat the trek to The Well of Life again and again, while
    the Normies stay home and enjoy the fruits of their labors.  Life for the Bi-Polars is hard but they still
    laugh and love, work and play, hope and pray, just like the Normies do.  The Bi-Polars, if given the right combination
    of medication and therapy, can live fruitful lives. They only require
    understanding and compassion from the Normies, who often do not offer any
    support.

    The Bi-Polars could do just as well as the Normies if only
    someone was willing to offer the help they need.

    THE END

                I
    wrote this story to help my friends and family understand what I go through as
    a person with Bi-Polar disorder. The truth is many “Normies” see the symptoms
    and setbacks of Bi-Polar disorder as laziness, selfishness, and/or deliberate
    disobedience.  This problem is even more
    prevelent in “Normie” parents who can’t understand that the forgetfullness and
    impulsive behaviors are not commited by choice. 
    This can make life even harder, as accusations of selfishness and
    laziness become internalized and the “child” of these parents comes to belive
    they are what their parents say they are.

     

                “The
    Well Of Life:  A Bi-Polar Story” is the
    story of my struggles with Bi-Polar diorder but many mental illnesses present
    similar difficulties, to put it another way. 
    A mentally ill person must climb the mountain, while all the “Normies”
    out there have a pass for the tunnel.

     

                To all
    you normies out there, please remember:

    Mental Ill ness is AN ILLNESS, it is NOT A CHOICE, and
    it is NOT  A CRIME

    Please try to be more understanding: Life, with a mental
    illness, is hard enough as it is.

     

    To my fellow
    sufferers,  you are not alone and you are
    not a worthless or hopeless cause. Remember:

    BE STRONG WHEN YOU CAN

    CRY WHEN YOU NEED TO

    AND NEVER EVER BE ASHAMED
    OF WHO YOU ARE

     

     

      DON’T BE AFRAID TO CHASE YOUR
    DREAMS

     

    Thank you.

     

               

     
     

  • Nadine

    I think the hardest time I have is my family. they seem to thrive on denial. my grandmother died from complications due to Lupus and when I was diagnosed 9 years ago they didnt even come to see me in the hospital. they all know whats wrong yet they treat me as if im “faking” because im so good at “not looking sick” I wish I could say that I pretend more for my own benefit but honestly I have to pretend just so they dont have to work so hard at pretending. if I show up at there houses with sunken eyes or mussed hair they just tell me to eat more vegetables and use leave in conditioner as if thats really whats wrong instead of Lupus. just when I think the people whom are supposed to love me unconditionally are going to be my greatest support system on my worst days im instead in charge of assuring them that everything is ok and not to worry which leaves me feeling even more lonely than my “invisible disease”

  • texasgirl

    im 21 with lupus, i am gong to be a senior incollege this fall. this summer i work for my schools admissions office. They all know i have lupus and since i am young they treat me like a child always making sure i eat or wear a hat when i give tours. i know they mean well and only want me to feel comfortable but sometimes they underestimate me and stick me doing minial taske swhen im fully capible to do more.

  • Alanna

    I am 19 and have poly glandular autoimmune syndrome, it has caused me to develop an under-active thyroid, Addison’s disease, coeliac diesease and diabetes. I cant go to Collage or Work because i simply dont have the energy, and despite this I feel like I’m constantly trying to prove my illness to Doctors. I cant tell you how many times I’ve been accused of not exercising enough, or how its all in my head and I need to just get on with my life. Its frighting to think that if a medical expert cant sympathise or at the very least believe me then how is the everyday people supposed to when they have very little knowledge about my illnesses at all! 

  • Elisnanna2011

    I’m hoping you have more good days than bad….seems like mine are getting fewer and farther between. I’ve had very bad days this week, but today, I’m feeling pretty good. That of course makes me more active and I’ll have to pay for it…sigh. 

    I’ve gotten the same looks you’re talking about and I know it is frustrating. But here’s how I feel about it…they don’t know me, they know nothing about me. If they’re gutsy enough to look at me with disdain, I think they should be gutsy enough to tell me so….and if they do this, I can tell them to go home and look up fibromyalgia and emphysema so they can understand why I’m using this damned cart. God knows I’d much rather be up and walking through these big stores like I used to but I JUST CAN’T DO IT ANYMORE.  So until they have the guts to do that, they can just cross their eyes at me all they want and it l let it slide right off my back. ;-D

    Don’t let ’em get you down….it’s nothing but ignorance on their part. And even though it’s incredibly frustrating, people are gonna do what people are gonna do. Just flip ’em the bird in your head and you’ll feel much better…! lol 

    Hope I haven’t offended in any way… 🙂

  • Jagee187

    Barb,i am 33yrs old w/fibro,osteo-arthritis and nerve damage from spinal fusion in 07.Anyhow i dont have hc parking as im not on ssi yet but as you said i have good days and buy now the stores around here know me so their is some days i walk in store and others i have to use cart/buggie or cane. When i use their moterized cart i get looks from everyone and its so frustrating that i sometimes just walk anyhow.I never had what happen to you but iv been made fun of cause” she dont look sick”…..ugh