Do you remember your first effort to explain your invisible disability?

Question by Dinah: Do you remember your first effort to explain your invisible disability?
Did you find it challenging to put into a sentence? That sentence was tricky for me. Finally came up with “permanent digestive and eliminative disorder from surviving pancreatic cancer.” It sounded bookish, but any other sentence would’ve been too long.

Best answer:

Answer by chiliswoman
Personally I think that is way too much information. Most people don’t want or need to know that much. If I were you I would simply say I am a pancreatic cancer survivor. If they are interested in knowing the impact of that – than elaborate and say it has a permanent effect on my digestion system.

When people ask me – I say I have a prosthetic implant in my leg among others things. Then if they ask a question I can gage how much info they really want to know.

Add your own answer in the comments!

13 Comments
  1. Reply
    jac the hat May 16, 2013 at 7:52 am

    I feel that every time is the first time all over again it doesn’t get any easier – I have given up – its hard enough talking to psychiatrists and psychologists especially when its a rare disorder. I also can look strong at times and its hard to explain the overwhelming exhausting frightening effect of being out of touch with other peoples reality.

  2. Reply
    Tripl_E May 16, 2013 at 8:13 am

    I agree that is way too much information. I simply state that I am a survivor. If I determine that the person is not just asking out of curiosity or just to be plain old nosey so that they can have something to gossip about then I will elaborate. One of the questions I pose to them when answering a question about my disability is to ask them what they know about a certain disability (i.e. cancer, kidney disease or whatever the disability) so that I can gauge if they are serious and if so, I will elaborate. I try to provide them with ways to help by giving them information on organizations that are fighting for cures or even better ways to treat my disability so that they can become involve by donating time or money or something. Otherwise, I leave it short and simple; I’m a Survivor!!!

  3. Reply
    Shelley May 16, 2013 at 9:02 am

    I don’t think Thyroid problems count as a disability but when I was going though treatment for my hyper thyroid I had troubles explaining to work why I needed time off. I worked at a fast food place and my boss had the ” well you don’t look sick “attitude. She couldn’t understand that radio active treatment meant I wasn’t supposed to be around people much less serve food to people. She seemed to think that because I wasn’t being hospitalized for it that it wasn’t a big deal. It wasn’t as invasive as the procedures I’ve had with my amputation but the treatment was going to stop thyroid functions which messes with your endocrine system.

    In the end I quit because I was too sick and too tired to deal with work. I understand where you’re coming from. It’s hard to explain to people what’s going on with out giving a biology lesson.
    I had a hard time with my boyfriend and my friends when my thyroid was out of whack. Trying to explain that I don’t want to go out because my thyroid was throwing everything off was complicated. My Grandmother still thinks I have depression despite the efforts of my parents to explain that thyroid problems sometimes mimic depression symptoms.
    The medication I am on now have done wonders.
    Invisible disabilities and health problems are annoying.

    With my amputation people can see it and accept it. But with my now hypo thyroid even my boyfriend has troubles wrapping his head around it.

  4. Reply
    kasandra k May 16, 2013 at 9:40 am

    You can’t explain it all. If a person has had their thyroid give up and need 100% drug replacement they are going to be freezing to death in public places where most people need icy air conditioning.
    A person can need and take bladder pills and do just fine until expected to put up with long jouncing rides. One needs to come up with some kind of an explanation of the pain one is being put through I suppose.

  5. Reply
    lady May 16, 2013 at 10:31 am

    people do not understand or appreciate invisible disabililties. eventually i found that they turn on u and accuse you of faking. i hate it. its really not even worth telling people because i have had it thrown in my face more times than i can count.

  6. Reply
    Shōjo-ai May 16, 2013 at 10:47 am

    I TOTALLY AGREE WITH LADY:
    “people do not understand or appreciate invisible disabilities. Eventually i found that they turn on u and accuse you of faking. i hate it. its really not even worth telling people because i have had it thrown in my face more times than i can count.”

    I have both mental issues and physical issues.

    I need a hip replacement and my last doctor looked at my x-rays and literally said “Holy Sh*t! How can you even walk?”

    I have the natural “Red Head Pain Tolerance” because of the mutation that causes red hair combined with just being really ornery… So I can usually just keep my mouth shut regarding the pain because if I told everyone how much I really hurt, I would never be treated as “Normal” and I was sick of being treated with kid-gloves.

    So now, if I am going out with family or friends, unless I hurt UBER SUPER BAD I will not use the crutch and will just suffer through it so that I can have a good time along with everyone else.

    I need to plan my outings so that I will know I will have a day to recover afterwards because sometimes, like when I go to a mall, I can’t even get out of bed the next day.

    I am young…
    I am heavy…
    I limp but have learned how to hide it pretty well when I want to…

    So people are ALWAYS telling me that I am faking it or ‘exaggerating’ it for attention.

    I even had one ‘friend’ go around to our mutual friends telling everyone that the BPD, Depression, and Anxiety were not real and that I was exaggerating my leg pain “To remain unemployed and fat.”

    Whenever I talk to anyone I know about my mental issues, all they tell me is “Well, just think happy thoughts and you won’t be depressed anymore!” and “There is no reason to have an anxiety attack! Everything will be fine. Just stop it…”

    No one takes my self injury seriously…

    No one even really believes me that I’ve tried to kill myself 5 times between the ages of 11 and 23.

    My father even tells me to just not talk about it because HE can’t take it!

    Sometimes it is almost too much to bear…

    But luckily, come Monday, I will be meeting with a social worker to try and figure out if I can apply for disability and aid so I can finally get some help for my hip…

    Then on Friday the 2nd I get an “Intake Appointment” at my clinic’s sliding scale mental health center so I can see if I can finally get some therapy!

    I can’t wait to have someone actually HELP me try to get help! I am just afraid that they, too, will say “Sorry, your not disabled enough and too white to get aid in Inner-City Chicago!”

    I don’t even try to explain it to anyone not in the medical field because it is just too depressing to be dismissed as “Just wanting to stay unemployed and fat.”

  7. Reply
    gotta luv da Li May 16, 2013 at 11:15 am

    Does mental illness count here? It’s covered by the ADA. It’s invisible, and it sure is very difficult telling ppl about. I was diagnosed later in life with Bipolar type II. At the time, I was so hypomanic I had no problem telling the few that I told (motor mouth is a symptom). Later I told my 70 y/o parents. It was very, very difficult. How do you say that your child that you know deals with some depression but otherwise you believe is well inherited uncle T’s illness. It’s like handing ppl you love a plate full of guilt.

    Last week, my employer formed an employee-management disability awareness committee because everyone recognizes that there are virtually no disabled employees… visibly disabled, that is. My boss is the only one at work who knows of my illness and I want to keep it that way. I joined anyway. I went armed with some knowledge – antidepressants are one of the highest prescribed meds by one of our health care prescribers. Combine that with having heard managers give the annual non-discrimination speil and close with, “and mental illness… but no one like that would work here.” I don’t want to out myself, the stigma and potential consequences are to significant. But we have a big population of invisibly disabled, and it goes beyond my soapbox on mental illness as I’m sure you know. So, I’ll end by saying, congrats on beating pancreatic cancer. I have an uncle and friend who didn’t. I always am amazed by those who do.

  8. Reply
    universaldorkette May 16, 2013 at 11:37 am

    I am Deaf so that is an obvious invisible disability although I don’t consider it to be too disabling for me, anyway. One incident that stuck with me and reminded me to be more alert of my surroundings- I was at Target, just browsing stuff then this person just came up into my face and started to talk so fast I couldn’t even lipread to save my life. I said “slow down, I am Deaf. what’s wrong?” since I can talk a little. This guy got all wide-eyed and expressed a face of apology. Turns out he’ was a Target employee and thought I was deliberately ignoring him when he was asking if he could assist me with anything. I got a 75% discount for that day, numerous apologies from him and his manager. Don’t think this guy should be employed in customer service of any kind!

    After reading several comments, I realize my disability is easy to explain by simply saying I’m deaf or pointing to my ears so I feel for all of you when your disability[ies] are too long to put into a sentence or more elaborated. I also think it is sad when people think you are faking it or just trying to get attention. Just continue to keep all of your heads up! 🙂

  9. Reply
    me May 16, 2013 at 12:25 pm

    I would just say I’m disabled…period. This rest is really nobodies business and you need not explain

  10. Reply
    dogmom1694 May 16, 2013 at 12:49 pm

    I have to re-live it everytime Some one ask about my service dog. I have been told, its cool my dog can help me yet others tell me your not disabled unless your blind.

  11. Reply
    emt_me911 May 16, 2013 at 1:07 pm

    Mine is easy…”I was born deaf. Please maintain eye contact when speaking to me. I rely on lip reading and facial expressions”.

    I’m lucky..early diagnosis and intervention enabled me to learn how to communicate effectively. I can speak rather well although the monotone of my voice sometimes gives me away. Also, my hearing aids are not hidden. I’m not completely deaf…I can hear a few sounds…but with only 20% of normal hearing, I’m considered deaf and disabled. I don’t consider myself to be either one. I’m just a normal, everyday person who can’t hear.

    EMT

  12. Reply
    smtrodent May 16, 2013 at 1:16 pm

    I think as more people use the phrase ‘invisible disability’ it’ll help. (And now I want to make a lolcat poster of an ordinary looking cat captioned INVISIBLE DISABILITY), I can say ‘I have an invisible disability which means sometimes I need extra help with things even though I look fine’.

    I have chronic daily migraines and I am in remission from ME/CFS/CFIDs, both of which are massively disabling – and invisible. The migraines issue is the easiest to explain, so I use that, but I use the phrase ‘invisible disability’ more and more. TV ad campaigns help.

    The worst thing is when people are helpful but you want to be normal, so you have to try to choose between being snappy and ungrateful or being wrapped in cotton wool or having to explain endlessly that you’re fine just now, fine just now, fine just now… That’s usually worst on the first time I am with someone.

  13. Reply
    Jiminy Cricket May 16, 2013 at 1:28 pm

    Yes, when people found out I was epileptic I was treated like I was the devil’s child.

    I rarely admit it to anyone now. I have very good seizure control at the moment anyway.

    If I am on the spot, I say “slight seizure problem…” I rarely use the word epileptic!

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