Dealing With Invisible Disability: But You Look Well!
83
I'm glad I look well! I'm happy and well-adjusted. I'm enjoying retirement, and am making plans to travel, write, enjoy life, and stay happy. However, I am too young to have retired in the traditional manner, and people assume that I must be independently wealthy, in order to be able to afford retirement and the many bills that still come in whether I'm working or not. I'm not independently wealthy. I have a small disability pension. In short, I'm living with an invisible disability, and sometimes it makes life awkward for me. And yes: sometimes I feel guilty, because my arms and legs still work, and I look -- well, I look WELL. As in healthy. Sound. Able.
I'm very glad that a request was made for this topic, since it forced me to research the issue. From acute chronic pain to chronic fatigue to learning disabilities to ADD to deafness to chronic depression: there are many circumstances that can make life so much more difficult for children and adults, and each one has its own attributes, hardships, and coping skills. There are some great support sites online that help folk understand the nature and characteristics of Invisible Disabilities, while counseling sufferers on how to handle the guilt they can feel at looking well, but feeling awful; looking well, but not being well; looking well, but being incapable of doing tasks at which they used to excel.
The next time a customer is taking a really long time completing her purchase with you, give her a break: she may be unable to hear you, or she may be in intense and mind-numbing pain, or she may be perfectly capable of understanding you, but has lost the ability to count her change or figure simple math in her head. She may look perfectly well, but she may be suffering the after-effects of a stroke or other brain-scuttling condition, and it may take her a little bit longer to complete simple tasks. She's not an idiot. She's you, only with an invisible disability.
A great website for sufferers and non-sufferers alike. This site provides information, education, support, and a sense of community. If you are currently experiencing an ID, you will find that you are not alone, and that there are many folk just like you, feeling just as hopeless or helpless as you, and who want to help you cope.
This is the official social networking site created by The Invisible Disabilities Advocate. More articles, photos, news, tips, blogs -- a real community of human beings who understand. I'm glad I found them!
A serious article on how kids with ID's are treated in the school system. An excellent paper, with sound resources provided at the end, for tips on dealing with kids who have any learning disorders -- and there are plenty of those. And for those of you who are thinking that the kids just have too much sugar in their diets (I confess, I used to be a skeptic), these disorders are real, emotionally disturbing, and ultimately can be emotionally crippling if not treated with intelligence and compassion.
A great site started by the parents of kids with APD (auditory processing disorder) -- a disorder I didn't even know existed. The parents themselves are sufferers, and so all the information contained here is tested and true. However, some of the page links don't function, so be patient. :)
Further Reading
Cameron, James, Kim Patenaude, and Shauna Troniak. “Invisible Disability and the Duty to Accommodate in the Workplace.” Presentation to Health Canada. December 3, 2008.
Engel, David M. and Frank W. Munger. Rights of Inclusion: Law and Identity in the Life Stories of Americans with Disabilities. Chicago: U Chicago P, 2003.
Herr, Stanley S., Lawrence O. Gostin, and Harold Hongju Koh. The Human Rights of Persons with Intellectual Disabilities: Different But Equal. Oxford: OUP, 2003.
Some Hubs on ID's
- Trichotillomania Shame: The Secret Hair Pulling Compulsion
I want to share my experience with Trichotillomania to show that myself and fellow trichsters are not alone. I also hope that just by paying attention to myself and chronicling my actions, I can eventually decrease the compulsion. Most importantly, I - living with trichotillomania
“If cutting your hair would get you a job would you do it.” The answer is NO. if you are living with trichotillomania (TTM), you might understand my reasons. I hate hats and I hate having short hair. And... - Head Trauma and Traumatic Brain Injuries
I know of two people who have had head trauma and Closed Head Injury, TBI (Traumatic Brain Injury). My Husband had the closed head injury and TBI and his story is being told later in this article. A...
CommentsLoading...
So many people are uncomfortable with disabilities in others they try not to notice or think about them. Excellent piece!
I have a friend who was recently diagnosed with from frontal lobe brain damage who exhibits some of the symptoms you've described in this hub. For several years we have wondered why he seemed depressed and uncommunicative. Recently he had two car accidents caused by his inability to react quickly enough to avoid a collision. He is no longer driving. Apparently there is little that can be done to remedy the problem. He is around age 65.
Thanks you for bringing this into focus.
Uninvited -- yeah -- the cane can make all the difference to folks' attitudes.
Smireles, I like to think that the folk who feel uncomfortable aren't worth talking to, anyhow!
Ralph -- that is so sad --
Thanks, LadyG, for stopping by.
I have a dissability but SS won't pay for it. They don't think it is qualified enough. That is fine becasue I now am a momemaker and my husband's Executive secretary. I had a DVT and can't stand on my feet for over 2 hours at a time. I also notice (recently) that I don't seem to lift that leg up as far as I think I am. I fell up the stairs the other day and was scared to death that I would get another DVT. I haven't thank goodness!
I know what you are talking about with the brain injury and have just learned the name of it through a friend on Facebook. I will have to look that up later, but my husband has it from an Auto Accident he had. The things the College --second degree put him through for his exit exam was rediculous. I wish we would have known what he has and the name of it back in 1999.
My son has anxiety and ADD. It is difficult. People would tell him to just snap out of it.
LadyG: sorry to hear that. It makes every aspect of life that little bit more difficult.
Pete: it would be like telling someone with a broken leg just to snap out of it. Or like telling a flat tire to go re-inflate. ADD is no fun for kids. I used to think it was all a load of hooey, until I realized how difficult it is for the kids to concentrate. No fun at all. Hope your son's meds are working well.
I think it is called Speech Abraxia or something like that.
I get so tired of people feeling like things that aren't "obviously" wrong with you are just "in your head" and that you better just "get over it." I have learned this lesson well recently - you just never know what another person is going through!
Good hub!
Teresa, as a chronic pain sufferer for the last 39 years, I have built up some experience of living with a hidden disability. Like you, I continue to do as much as possible in my life, and save my best times to be with my family, who understand and are supportive.
This was just as outstanding the second time, as it was the first, Teresa.
Yep, I think I read this the first time it was published. But hey, I do reruns! :D
I have a bad back. After my incident I was really bad for three years. For about a year, ( I couldn't go out the first year) I had a handicap thing to hang in my car. If I was having problems, I could park in the handicap spots. People would look at me like I was the devil. Here was a tall 30 year old guy that looked normal on the surface, using a handicap spot. Sometimes the extra short distance made all the difference on going out.
I missed this hub the first time around but am glad you republished, Teresa. Excellent topic that cuts across so many different diagnoses. I can name at least half a dozen people in my life who have invisible disabilities, from Louie Bodie Dementia to Chronic Fatigue Syndrome to Fibromyalgia. I'm glad Paper Moon mentioned the handicap placards. Who hasn't seen someone who "looks perfectly normal" parking in handicap spots and getting dirty looks? Your hub is a good reminder to all of us to be more tolerant and not jump to conclusions.
Thanks, Theresa for writing this and bringing awareness. As a woman with a hearing disability and being healthy otherwise, I have encountered situations where a person would be confused as to why I was ignoring them, until I explained that I have trouble hearing; once they are aware, most folks are pretty understanding and helpful.
Thank you for writing this Theresa, and giving a place to share and educate...I learn so much each day from my clients as I support them while living in their own homes to be as independently as possible. In turn, I can educate others to be more understanding.
Don't know what to say! thumbs up.
Thanks for publishing this one Teresa, again, as I missed it the first time around. Never knew you had anoher ego until recently. LOL I have been going through this for nigh unto 16 years now. Like Uninvited Writer says, a cane makes all the difference. I used one for several years after illness struck me down. I too had a handicap sticker for some time. I am able thankfully to do many things now, but never will be normal and the shopping thing is a killer for me. I learned many good things since becoming disabled and look at people in a better light now, instead of regarding them as drug addicts or retards, I see them as people with a heart breaking disability and have compassion, not disgust. thanks dear.
Thank you all for taking the time to comment -- you're right; it's an educating process: when we know someone else is having trouble, we are willing to be more patient. But if there's no way to tell. . .
Your kind comments are all very much appreciated. Thanks!
Excellent reminder to all of those who do not have hidden disabilities. With a metal plate and six screws holding my left leg together -- I've been hollared at when using a handicap bathroom stall for "not being disabled."
wonderful hub. great job bringing an important issue to the forefront. In our go go go society, people lose patience and get frustrated with others so quickly. They don't stop to think about what the other person may be experiencing.
Thanks, Jerilee and Janetta. We all need a reminder.
Lady G the DVT is scary stuff. Hugs to all of you.
i'd like to say thanks for posting this i came to the site today just to grab a few links from my hubs to put in my myspacefor my friends and family to read.. I'm currently having a struggle with TTM. it's not exactly invisable but it is usualy well covered. alot of people when they see or hear me mention it just say "well just don't do it" then they get mad at me when i get frustrated.. so again thanks.
Raven King, thing is my sister in law and my daughter don't understand it at all. SIL tells me to get a job in Target or Walmart for goodness sake! So does my daughter. You can't see it so it doesn't matter I guess.
Teresa - as others have said 'great topic'. There are so many invisible illnesses/disabilities. I have one. In truth I'm largely ok (medicated) but now and then it kicks up a fuss and I'm floundering. But ... I look ok. On the occasion I've been really unwell I've simply stayed in doors.
Luckily I'm not as inflicted - or afflicted - as folk with other ID's but I still understand how difficult life can be. And others' perception of how you are or appear as an individual. You look ok ... damn!
Thank you -- Raven, HeX, LadyG, fwoggy: your comments are much appreciated, and I'm sensing that several people who have posted here probably could write some great hubs on their own ID's; only by letting others know can we ever hope to help them help us.
I wrote on my DVT and also one on Head Injury and Trauma and also one on Rosacea.
Lady -- I'll post links, ok? Maybe we can get a network of them. Thanks for letting me know.
As a civilization we have a lack of patience with each other concerning abilities and disabilities. It goes with our general lack of patience. Thank you for this article on the subject.
Excellent Article. I have recently been diagnosed with a indivisable disease. The symptoms are chronic fatigue and severe adominal pain, two things my former employer couldn't see. Even with doctor's letters, they still doubted. Amazing how people react.
Great article and message.
Thank you, Tom and Bgpappa, for your kind comments. bgpappa: I'm sorry you have had to suffer that indignity. Here's hoping you are feeling better, at least about the situation!
Thanks for the kind words. In the end it all works out. With the time off I started writing again, something I always enjoyed. With that I found Hubpages and people actually read my writings and I get to engage in a fun community. It all works out in the end.
Thanks for this hub. I'm visibly disabled, in that I walk with sticks (or with a frame on bad days). I needed to know that folks could be invisibly disabled, because I'm always seeing people who do not look disabled parking in 'disabled' listed places, or using toilets earmarked for the diabled. Some, I know, do use these placs just for convenience, but some, I'm now sure, are just as disabled as me, I simply can't see it. Excellent hub and interesting, helpful comments.
I have a friend who had a brain injury from an accident years ago. it seems to me that he functions qite normally, but he tells me that he has all kinds of problems, so that's just one example.
Hey, BGpappa -- things do have the darnedest way of working out, don't they? Glad you're here!
Idugit -- thank you very much for coming by and commenting. We all need to take care of each other, I guess! It maddens me when I see someone park in a handicap space (not that I have a handicap sticker) who can walk with no problems.
Teresa, Thaks for putting the link in! The more we know the more we understand and the more we get along.
There is another one that I have but haven't written on and that is Ulcerative Colitis. Maybe I should do one on that...or is there another one here already?
Thank You for sharing. I have worked with many children with specialized needs. They have a very hard time coping in society and therefore it makes it very hard on their families. Great Job.
Another brilliant hub. Glad you decided to republish it. Great information and advice.
People who abuse disabled facilities are selfish beyond belief.
I went with my OH and his parents a few years ago to a show at the Barbican. Afterwards, we were waiting for some time outside the disabled loo, and OH's mother (who had MS, and was in a wheelchair by then) was getting very distressed and anxious at the delay.
Eventurally, 3 giggling girls in their early 20s came out. OH's Dad asked them politely if they were OK, as they had taken so long, and one said, "we're fine! We just used that one as the mirror's much better for make up".
LPinky -- thanks for the great work you do for kids!
Badco, and Dead yet? --thanks for the read --
LG: yeah. I have a "friend" who parks in disabled spaces all the time. I call him on it, and he just shrugs it off. What entitles him to special treatment? It makes me angry, too. Those silly girls at the Barbican needed to be brought back to earth. It obviously didn't even occur to them that they were inconveniencing someone.
howdy! want to give my thanks for your storie and say that i do understand what you feel like. i parked in the disabeled spot one time adn felt real bad about it for a lomg time. it was just that i had this terruble hang over and could barly walk! i think i was stil a little drunk but had to get my son to shcool so i just parked in the first spot avaliabel. i will never be so thought less again.
Natasha, you are a hoot. Stay safe and take care, Teresa.
"Those silly girls at the Barbican needed to be brought back to earth." Don't worry, OH's father was good at a cutting remark or two....
I have read ur hubs and most of them are fantastic !! Keep up the good work.
Wonderful article, great awareness promotion. People don't stop to think about ID's or even know they exist. I had trichotillomania when I was a kid going through a rough time. It was awful. I have a couple of ID's, one can be debiliatating. Sadly, many of them are kept secret to "keep up appearances" or for fear of being judged. Thanks for this wonderful hub.
Wonderful hub about an important topic. Perhaps (hopefully) it will raise much needed awareness.
This is an incredibly important hub – I am bookmarking your links right this minute! Sadly, our society assigns the sick role to people who have disabilities, and if their diagnosis (visible or not) doesn't fit mainstream expectations, it throws outsiders for a loop. My daughter has a fuzzy, not completely confirmed diagnosis of sensory integration/sensory processing disorder. I find it's important to focus on what she can do, because disability really is just a spectrum on the scale of human experience. I hope you do the same for yourself and manage to brush the guilt aside!
Excellent article Theresa! We are all guilty of judging people before we know the whole story, or else judging them by our set of circumstances. I really hope life is getting better for you.
Thanks to all of you for reading, and for taking the time to comment, too. I appreciate hearing your take on the issue -- it seems that there are plenty of us with stories to share. Thanks!
What a great Hub! As a 32 year old with a invisible disability, I'm completly frustrated with how the world judges so harshly without clarification. Maybe this article will help. Your article was very well written and informative.
Boy, this is perfect timing. I'm going Wednesday to see which ID I have. All they know is that I have one and it could be deadly. People are surprised at my age to be "sick". They don't understand how those hidden enemies can be so deadly.
this is very informative. and it makes us understand more people with disabilities.
Thank you for writing this, I have chronic depression and it really does affect a lot. I left my teaching job when I could not manage the negative environment any more, however I can work and I can be okay. There may be some worn out spots in me from a long marriage but I just need a decent environment.
I wrote a hub on depression but I think I am going to re-write and improve. I am getting inspired by the other writers on this subject.
Urban -- thank you for your comment. I know how frustrated you must feel -- hang in, there!
RGraf - I'll be thinking of you on Wednesday: all the best, and I hope you will have good news -- or at least not too bad news -- to share, soon.
bingskee -- thank you for reading, and for your kind comment.
Anne -- I'm so sorry! the negativity in teaching really got me down, too. I hope you will write some more on depression; who knows what poor sould might find real comfort in what you have to say. Thank you for reading and taking the time to leave a comment.
Thank you for this hub. I suffer from IDs and am currently being bullied in the workplace because of it. In fact the bully has now gone as far as to tell me that I'm going to be dismissed.
Results negative - bone marrow biopsy done. Still waiting.
Tigermad - seek legal aid, if you can! That kind of bullying is against the law!
RGraf -- thanks for the update. Waiting for any news like this sucks. My thoughts and prayers are with you.
I loved your piece and must say it was well thought out. Many people suffer from invisible disabilities. Many people suffer from these problems and do not know it. Good job and keep on writing.
Thank you, Advocate -- it's always nice to get encouragement.
I cried reading this hub.
When I was in school, people saw me as the troubled kid, the bad kid, the one that wouldn't pay attention or follow the rules. I tried my best but I couldn't get along with the other kids and I couldn't focus on my school work. I had terrible mood swings most of my life, that came to a breaking point when I was 15 or 16 and started self-injuring.All through school I was mercilessly bullied. Now I don't mean to brag, but I am not a stupid girl, so no one knew what the problem was. They yelled at me, took away privileges, threatened to hold me back a year, and everything else.
When I was 16 I was diagnosed with a rarer form of bipolar I disorder, which not only causes severe, unexplainable mood swings, but also is the only know form of bipolar disorder to get progressively worse the longer it is left untreated. A year later I was diagnosed with ADHD as well, but I never quite responded to medication and now I am living with it and learning how to cope. I only wish I had found out earlier, instead of my parents and teachers blaming me, blaming television, blaming the candy that I had supposedly eaten.
I should write my own hub on the topic, I think. I wish people who are in a position to tell parents "Something may be wrong" should be better trained to spot the warning signs. No child should have to go through what I suffered through. I also think that every middle school and high school student should take mandatory classes explaining mental illness so that we don't have scene kiddies running around pretending for attention, hogging up resources in an already clogged mental health system, while everyone else makes fun of the kids that really do have an issue. I spent too many hours in the waiting room of the mental health clinic, only to strike up conversation with the kid next to me, who says "I'm not really sad, I just started cutting cause it was cool." Cutting is not cool. I'm ashamed of my scars and I would never run around glorifying my problems. Sometimes I want to take a baseball bat and knock some sense into those kids...They'd never think the way they do if they had spent their entire childhood in a fog of mental illness.
Oh my dear, I'm so sorry you had to go through that. I've had adult ADD since my ECT, and it is distracting enough, so I can't imagine what you must have gone through with ADHD and bipolar I as a young kid and teenager. I was merely depressed as a teen, and thought it was normal...
Sometimes parents just don't understand what their kids' behavior means; maybe all parents should take courses, too, on what to look for if they are concerned about mental illness.
Fog is a good analogy. I think you should write a hub -- you certainly have plenty of material to draw from, and you could potentially really help someone who needs to read that he/she is not alone. Thanks for coming by, Suiiki.
Teresa, I read somewhere once that when there is a slow person in front of us (whether in a line or driving a car), we should imagine it is a beloved family member - perhaps our grandpa or grandma, for instance. This can make a real difference in how we behave and the level of our patience.
I have also learned to say to myself, "That thought is meaningless," if I start making up stories in my head about the guy who looks fine in the handicapped spot. I don't know him, don't know what he may be suffering, or anything else about him - so anything that pops into my head is very likely completely wrong.
Now that I've had a heart attack but don't have any visible signs of illness (unless I need my cane or walker), I suddenly know what it's like to have an invisible disability. I'm really glad you wrote this and gave us all something to think about.
Hey Mindfield -- great strategy for all motorists ('specially as I'm probably the old lady tootling along in front of people now, slowing 'em all down!)
Thanks for coming by and commenting -- hope you're doing much better after your heart attack.
I also suffer invisible disabilities. Being a young mom, however, I am expected to function as normally as every other 26-yr-old with kids. Thanks for putting this out there for others to see!
Hi, Kathryn -- sorry to hear you are experiencing the negative aspects of other people's expectations. Thanks for commenting; the more people who do comment, the more we may be bringing this into the public arena.
Great Hub! Here's one to boost anyone's confidence: http://hubpages.com/hub/higherconsciousness
Tee,
Thanks for sharing. I sincerely wish the best for you. Kick back, relax, and realize that life is still full of fun.
Guess now you've more time to write.. ;) If only I've more time to read..*sigh*
What's an alien to do?
Compassion, and treating someone with intelligence is the key. Thanks for the info :-P
Great Great Great Work
really good hub. I am young with a disability, Rheumatoid arthritis and it's frustrating in public when I am not fast enough or people stare at me if I ask for help out with my groceries. Yes I know all about invisible illnesses.
I have post polio sequel and weaved over a lane once being followed for 4 months by a new recruit who didn't know what she was doing. She called in the Napoleon Cop who physicaslly slammed me around.The detox people said you blew a 0-what the hell are you doing here? I was reaching for my ipod and was 2 blocks from home and just had a hip replacement and they wanted me to do some weird test on a hill where I could have fallen, injured my hip, further the damage to my joints and muscles. Today the King calls me and asks for his original summons because he needs to change it-it's now a felony to have your medicine in smaller med boxes or containers-despite all the scripts being in my purse and actually 4 empty bottles in my car which they never found. They left my lights on and my car died in a dangerous lane of traffic-i begged them to turn off the lights-they left all my personals in the auto-purse/credit cards/phone-they gave me a piece of paper. I believe if he screwed up the summons, it should be dismissed. I hung up on him informing him my attorney had the summons. I really wonder what the hell the point is anymore...been trying to get work-this fucks my life....unless it's dismissed-anyone know the law? Colorado
You MIGHT be able to file a motion to quash the proceedings--this doesn't mean the case just goes away, but as you weren't doing anything illegal, filing to quash puts all the burden of proof on whoever brought the summons in the first place, and there is nothing here to prove other than the fact that you can have doctors, surgeons, and hospitals make the police look pretty darn foolish. Good luck--it shouldn't be too difficult for an attorney to make them realize what a mistake this is.
I have been disabled with Ehlers-Danlos Syndrome (EDS) my whole life. I have had a disabled parking tag since I was 40. I am 48 & trying to going out on SSDI. People give me rude looks when I use handicapped facilities. But using any joint in my body causes pain and injuries.
You just can't see how disabled I am. This is GREAT blog.
Most often than not, people who grow into adults with these 'invisible disabilities' are often misunderstood, and are often socially neglected. Overall, this is a very inspiring hub. Thank you for sharing your knowledge with us.
Hi again! I'm Back i had to take Some time to get my TTM Under control. Meditation and having a ton of hobbies helped out a lot. I Also found a hat I love to wear. I currently have a nice full head of long (albeit Greasy) shoulder-length hair :D here's hoping it gets to my waist.
This is an excellent hub! I have an invisible disability called Task Specific Focal Dystonia (TSFD). Not many people have heard of TSFD, and that includes medical professionals as well. I have learned to live with the discrimination I get from people who do not believe or understand that I have the condition...but, it sure sucks. Great Hub!
Like your article
Uninvited Writer Level 4 Commenter 2 years ago
Well done. I know the feeling, I have a disability that is unnoticable until I walk... It's amazing how differently people view you when they see you are not as mobile as they are. Some assume you are mentally deficient too. On the other hand, I found people rude when I walked slow however, when I am walking with my cane they can't be nice enough to me.