By Guest Blogger Wayne Connell, founder and president of the Invisible Disabilities Association, and Kathe Skinner, Invisible Disabilities Association Advisor
Why believe? Why believe someone is ill and in pain when their appearance and circumstances may indicate otherwise? Perhaps their body is crying out in pain, the brain fog comes and goes and they alternate between moments of brilliance and a loss for words. How can we determine the extent of someone’s injuries and illness just by looking at them?
The reason the Invisible Disabilities Association (IDA) was founded is for this exact purpose – to help those with invisible disabilities and chronic pain whose friends, family members, coworkers and perfect strangers may not “believe” that they are sick or in pain. We BELIEVE people who live with invisible disabilities such as Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), Dyslexia, Lyme Disease, Dysautonomia, Postural Tachycardia Syndrome (POTS), Autism, Multiple Sclerosis (MS), Bipolar Disorder, Depression, Agoraphobia, Reflex Sympathetic Dystrophy (RSD), Cancer, Diabetes, Chronic Pain, Fibromyalgia, Chronic Fatigue and thousands of others. We believe them when these people tell us what they can and can’t do each day.
Sometimes we have our own ideas about how much a person with illness or disability should be able to accomplish for their condition to be “real.” Yet, how many songs, books, movies and works of art have been created by people throughout history who have experienced pain and illness? Each person with illness and pain has different symptoms and therefore has varying levels of ability and disability. It’s also important to remember that for some people, these symptoms may come and go throughout their day to day lives.
Kathe Skinner, an Invisible Disabilities Association Advisor, shares her story of belief below.
Most of us with invisible disabilities walk the line between trying not to look disabled and really BEING disabled.
While my multiple sclerosis (MS) is more visible than it used to be, I’m still a bit prickly when someone says “Here, let me do that,” as if I’m incapable of doing it for myself. Back in April, though, I wish someone had said just that.
My first day of a Palm Springs vacation was unusually hot (105 degrees), so pushing my rollator, which helps with my mobility, out to my rental car took a lot out of me. When I saw what was waiting for me – a black car with black interior that had been soaking up the California sun for several hours – I decided I needed to try to switch to a different vehicle.
I went back to the terminal where, bypassing the line (shocking for me), I rolled up to the rental counter and told the man behind it, “I have MS, so if you put me in a black car with a black interior on a hot day, you might as well sign my death warrant.”
Switching to a light-colored car was easy, but that third walk through powerful heat was hard on my body. My left foot dropped and dragged, dropped and dragged, and messages about lifting my legs didn’t coincide with the messages in my brain telling me to push with my arms. I looked like an inch worm in mid inch.
Safety was up ahead in the form of a silver car, and it wasn’t a mirage; I could see it there in the far right outfield of the parking lot (if it was Little League, nobody could’ve hit a ball that far). Like a wayfarer lost in the desert, I pushed as fast as I could, and dragged more with every yard covered until – Hallelujah and kiss the cat – I was finally there!
Imagine the moment of deliverance from need.
Then you can imagine how I felt, looking at that car and noticing it had black interior.
Here’s some trivia for you: A closed car’s interior temperature rises 30 degrees in 20 minutes – think about all the warnings you hear regarding why it’s important not to leave babies and animals in locked cars during heat waves. Combined with an outdoor temperature of 105 degrees, that car had to be at least 135 degrees inside.
Get in? No way. But did I have any choice? Nope.
Suddenly, I had a loss in cognitive and physical functioning. Talking to myself, I said, “If I fall down, I won’t be able to get up. No one will see me. I hate looking so helpless! Nobody’s fooled anymore; you don’t look or act normal. Get in the car. Do it NOW.”
I don’t remember how I got from the car to sitting on the ground once I drove back to the terminal. Or how people helped me inside where it was cooler. “Are you okay?” people asked. “No. No!” I said. “I have multiple sclerosis. I have a bad headache, and no feeling in my arms or legs except heaviness. I’m sick to my stomach, and I can’t see very well. I’m hot – so hot, so hot.” I was trying to call my husband David, but I couldn’t remember the number. I remember thinking I must have mascara and snot all over my face from crying.
Bet I didn’t look so good then.
Amazingly, no one called 911. Finally, the police came and asked (a cognitively impaired) me if I wanted to go to the hospital. For the next five hours, I cooled down in the emergency room, had my requisite 10 minutes with the doctor and waited an hour for a cab back to the terminal to complete what I’d begun that morning – renting a car.
I didn’t have any fun and yet my first day of vacation had cost over $1,600! Physically and emotionally, I paid, too. I slept for two days and endured a massive panic attack, followed by 24 hours of mania culminating in emotional immobility. Four days after I got to town, I went outside for the first time.
Here’s what I’d like to see change: that service providers’ awareness is better on several fronts. First, heat is no joke for anyone, but especially the elderly, very young and those with chronic health conditions. Next, especially in a town rich with senior tourists, there’s a need to acquire knowledge about invisible disabilities. Finally, I’d like to see a mandate to act on behalf of someone as clearly incapacitated as I was. The rental company also agrees something was missed somewhere that day.
My take away? Not to assume people know what MS does to me; to act courageously to acknowledge my limitations, especially when they don’t show; and to take care of myself instead of giving control away. It’s no one else’s job except mine to stay safe.
Remember that fine line? Should I look more disabled – get rid of the make-up, look pathetic? I admit I might occasionally stoop that low. The straighter path is to educate others about the “presto-change-o” element of invisible disability. Widening that fine line shows others that disability isn’t pathetic and doesn’t look that way, either. Feeling that way myself is a journey I haven’t yet completed.
IDA will never stop believing people like Kathe and we hope others will do the same. Our goal is not to judge the cause or extent of illness and pain, but to lend a helping hand, a listening ear and an understanding heart. Let us love first! Let us not be deceived by what we see or think we see or what we don’t see. IDA envisions a world where people living with illness, pain and disability will be INVISIBLE NO MORE! Won’t you join us, please?
For more information:
To find out more about IDA and the work we do, visit http://www.invisibledisabilities.org/.
Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1997 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the booklet, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband caregiver with an extensive background in management, media and technology.
Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years. Find out more about her and what she does at www.BeingHeardNow.com.
I’m viewed as being a lazy woman who does not care to do anything with her own kids. It’s caused heated arguments in my home, I get called names I don’t care to repeat here. I cannot help it, I cannot even explain what I feel. I’m told to “get over it”. I need advice.
Hi Marsha,
You may find the Invisible Disabilities Association (IDA) website (http://www.invisibledisabilities.org) helpful. IDA also offers a booklet called “But you LOOK Good!” (http://www.invisibledisabilities.org/educate/butyoulookgood/) that helps explain invisible disabilities and chronic illness to family and friends, and offers tips on how they can best support loved ones with invisible disabilities.
Best,
The Disability.Blog Team
I too have MS and most people cannot see that. The fatigue is overwhelming. Friends and family think I am just a lazy complainer. They have not bothered to learn about MS. In my youth, I was very high functioning. So they cannot understand the change – even though it has been 30 years. I am in great need of understanding support. Any suggestions? I have extreme light sensitivity and cannot go into public places (more than 15 min – such as grocery shopping) due to the lighting. My job has been quite a challenge also, causing much stress. Stress – never a good thing for MS. Thank you for your article, Kathe.
I agree with alot of the comments on this article. It is definitely worth our while to advocate for ourselves. People cannot read minds or know what is going on with us intuitively.
But by that same token, I would like to remind Sue that sometimes “young” “healthy looking” people have needs which require the use of the handicap stall in the bathroom just as much. My best friend has an ostomy, and she looks perfectly healthy, but sometimes needs the extra room, and I have ankylosing spondylitis which makes it extremely hard for me to bend at certain angles. It’s easy to get jaded if you see repeat offenders….but if these are people you don’t know – please remember that it’s not always people abusing privileges – they could ALSO have a disability that you are completely unaware of!!
God blesses you! Just knowing about the existence of the Invisible Disabilities Association supports greatly, helps to sustain trust in the reality of the goodness in the modern world. So while being disabled for life, but looking fine from the outside, I do not complain but enjoy the light and share my artworks with all around. Please visit the…Butterfly in Plater by clicking Art by Tomas
Thank you for the help to share the sunlight in a world so busy with itself.
So glad you’ve found a sunny path!
I have been a member of IDA for a few years, but don’t go to the site much now. I recently became the proud owner of a beautiful guide dog. I went to guide dog school for 5 weeks, and now I can walk places (when it’s not too hot) and I feel safe. My vision loss is from brain surgery a long time ago. I am legally blind, but have vision to the right in the right side of my right eye. I guess I don’t look or act blind (whatever that looks like). Since I now have the guide dog, people are aware of me. I have been asked so many times if I am a trainer of guide dogs, and I got so sick of it, found myself trying to explain myself, and instead started saying that yes I do train these dogs. It’s easier.
I spent my whole life acting like I did not have a vision loss, or cognitive and learning disabilities. Even though I walked into so many things and fell and hurt myself more times that I want to remember, I usually could pull it off.
I am not now going to act “blind” in order to not get questioned about my dog.
Thanks
beans
How courageous, Irene! Good for you! BTW, give yourself a break; not being courageous every time is okay…
Hi.
For 52 years on this earth I have had High Functioning Autism. So for 52 years I wondered what was so wrong with the world outside of my family. Yes -all along the spectrum the family is, so our family was normal.
They say to walk in another persons shoes and you will understand. Tell me please how someone with an invisible disability has visible shoes?
I love your use of words, Susan. Even if no one sees the shoes or sees the disability, the important thing is not what the world thinks. If you can see the shoes, that’s the only perspective that counts. Easier said, though, isn’t it??
This was very timely.
I am about to file a complaint against a public employee who works for the Sheriff’s Office in Cook County, IL. My disabilities are hidden. No one can see my a-fib. No one can see my breathing problems or the pain in my ankles and feet. I walk slowly, but deliberately covering up and disguising these flaws. But when things get bad, I have no problems using a scooter or asking for help.
On this day, I verbally stated I was having difficulty walking and needed a wheel chair. He motioned to a desk that was at least 30 feet away. I told him it hurt for me to walk and could he get it. He shrugged his shoulders and turned his back to me and began talking to co workers.
I normally function ‘pretty’ well. Some days are better than others and even the best days can quickly change. I just love it when I walk into the grocery store with no pain and able bodied and 1/2 way thru I am limping and I have to drag my leg and curse myself for not using the scooter. It was like I placed a bet on myself and lost – but sometimes I do win and that of course is what I hope for. Never once has an employee of a grocery store turned his back on me when I asked if he could get the scooter to me.
This person from the Sheriff’s Office is the worst I have ever met. I am advocating for myself and everyone else by making this complaint.
Imagine the horrors without the ADA. I bless and thank Justin Dart for all he did. But we still must continue to advocate for ourselves.
Yeah, don’t you love it when you go for the scooter in a store, looking like the last person in the world who needs it??? People DO NOT understand that with a little exertion even the most capable-appearing among us with invisible disabilities quickly look like something even the cat wouldn’t drag in! How to relate that to someone with no clue is not only difficult, but sometimes impossible. And bless those folks who are watchdogs for handicapped parking and set-aside amenities like bathroom or dressing room stalls. Sometimes they can be downright militant! But they have half the story, one in the visible spectrum only…
I agree they can be deceiving. I had 3 strokes, cancer, asthma, osteoporosis and glaucoma. Some days the pain in my legs ache so bad, I wish I didn’t have to use them. I use a cane because of a balance issue that I graduated from wheelchair, walker (which I absolutely hated) after the strokes. Trying to get rid of that, too.
I use 3 inhalers and walking to the door of a store can be hell. Especially with this heat. Today is the first day in months that we had temperature in the 90s, so it is rough.
I am really getting tired of kids and healthy ladies using the handicap bathroom. It is there for a reason. I cannot manuever in a regular size stall because the seats are too low, less space to turn around in when a young, healthy person can. God bless all. I am done ranting.
Same for dressing rooms in stores, too! I’m always on alert in case someone questions me. I find myself dreading having to try on clothes, and would rather make another trip to the store (using more energy — mine and the car’s) than get yelled at.
Great article! I am so thankful the Invisible Disabilities Association is bringing awareness, compassion and support to those of us who battling debilitating conditions!
Oh my goodness, Kathe! I so understand how heat takes us out within minutes. I, too, have MS. It is as if my brain shrivels like a dried apple instantly and I can’t move or think. Kathe, I am so excited about what you do for couples to help relationships!
It is true that (in general) men and women speak different languages. It is refreshing to see a couple helping other couples learn how to better communicate. And, since you live with a chronic illness, you have a deeper understanding of the special needs in a marriage with illness.
I love you Sherri! Thanks so much for the kind, kind words.
Well, it seems that what I go through on a daily basis is not all that uncommon. I am totally blind, partially deaf, suffer sciatica in both legs and suffer from a form of delayed sleep phased syndrome. Some days, I just don’t have the energy to get out of bed, but do anyway. Other days, there are no problems. I am working on the pain issue and trying a couple of new therapies for the sleeping issue. I do live with roommates and have told them to get my attention if I am doing something (bizarr behavior, etc.) associated with a cognitive malfunction. So far, this keeps me on my toes.
I live in a near continual hot house environment (Phoenix, Arizona) and there are days when going outside is just out of the question.
Geez, don’t you feel like a prisoner sometimes?
You should hand the pen back and state firmly(but politely) that you have difficulty hearing and that you *need* the information in written form. I am partially deaf myself (and also totally blind) and I sometimes have to have the person I am talking to repeat what they said. Fortunately, the hearing aid I wear compensates pretty well for my odd ball hearing profile. Unfortunately, I cannot simply ask someone to write it down for me as I cannot read print and I am still learning braille.
The takeaway here is: be polite and firm. If the CSR (or whoever) gets snippy with you, ask for a supervisor. You will eventually get someone that either understands or, at the very least, has a real brain.
Eric’s right on!
I thank God for all the comments. I have the invisible disability called SMI. I can hold conversations. I even held a job, until I was terminated because of my disability. I keep myself clean and dress neat. I have a couple of diplomas. But because my insides do not match my outsides, I am now in a legal matter. My protected rights as a person with a known disability was violated. Thank goodness for ADA laws.
You go, girl!
Thank you for the article, Good to know I’m not alone.
People do think just because you look fine there is nothing wrong with you.
I have pain with my neck and my arm and fingers goes numb, also in my lower back and in my legs I have pain, I can’t stand for a long time because I get stiff and my legs go numb.
God bless everyone with IDA!!
I second that emotion~
Am in the medical profession myself and there are quite a few diseases that do NOT manifest in outward appearances yet the pain/discomfort is just
too disabilitating for the person to work full-time or do basic household tasks. SLE (Lupus) is one of themost difficult diseases to diagnose unless you happen
to have an excellent physician – yet the gov’t does not recognize this as a disability (pain often horrific!) This was indeed an excellent theme for discussion.
Never “judge a book by its cover” – a lot is to be considered under the “cover”!
It’s so unfortunate that the knack of “looking under the hood” requires that other people are courageous. From my work with “healthy” couples, even people in intimate relationships are hesitant to do that. Makes us vulnerable, yes?
I am now not sure where you’re getting your information, however great topic. I must spend a while finding out more or figuring out more. Thank you for the wonderful information. I was looking for this information for my mission.
Glad we could be helpful!
Few years ago, I was in perfect shape but gradually loosing my hearing. It has gotten so bad that I tried to hide it and pretend that I know what people are talking about. I looked fine, groomed well and dressed fine. I approached an airline employee at the Atlanta airport and asked for some gate information. I handed her a paper and a pen, asking her to write it down please, since I am practically deaf. The woman looked at me as if I was pulling a prank on her, said nothing and handed me back my pen. I was frustrated and did nothing about it, thinking someone would not mind helping out here. After I left Atlanta, I got into thinking what in the world deaf people are supposed to look like to be convincing??
Talk to the airline’s customer service department; you’ll most likely get a voucher for $$ off your next flight. I know it feels like a drop in the bucket, but those of us with Invisible Disabilities (and there are more than we would think) have to speak up. Change may not happen, but change will definitely not happen otherwise.
I myself deal with chronic pain and other debilitating conditions ..I hate to be looked at like I can’t think for myself, I tend to push the limits in order to feel normal, dating is a big challenge for me. I have yet to meet someone that understands my limitations and the struggles I go through. Sometimes I feel I am just better off by myself. Living with this invisible illness has caused me much heartache and loneliness. I feel for anyone that has to live with the pain I go though everyday.
Boy, I don’t blame you for feeling sorry for yourself about all that…it sucks! I remember when I was dating, between marriages, and how I always kept in sight of a bathroom. My spontaneity was replaced by fear. Yeah, finding someone who likes you just the way you are is really hard…
I appreciate this essay so much! My disabilities (both severe mental illness and chronic pain) are invisible and people scoff when I tell them that I am disabled. They think I am just lazy or trying to get a free ride. NOT true. I used to love my work and it has been very difficult to lose that part of my identity. I’ll be visiting your website to sign up!
Yaay! I appreciate so much anyone’s visit to my site. I’m especially receptive to any suggestions you might have. Take a look at my blog ilikebeingsickanddisabled.wordpress.com for another, more specialized view, of what’s going on in our world! Thanks again, Aidel! (beautiful name, btw)
While reading Kathe’s blog, I nearly cried. All the things she mentioned mirror me. It’s so hard, at times to know your limitations and what we can and cannot do and if we will pay the price. God Bless everyone with an invisible diaability! I too have MS.
Keep the faith, Desiree. Sometimes we don’t really know our limitations until we exceed them. Even though, truth be told, I usually have an idea before I start that I’m going to go too far. I think that’s about denial, don’t you? Anyone who wants to have a disability, visible or in-, is nuts.
Thank you for sharing you story.
Thanks for taking the time to comment, Jordi! Appreciate it.
Brain tumors fit into this category, too. I liked the part about “the fine line between not wanting to look disabled and being disabled.”
Sometimes that line gets a lot wider and isn’t ironic that, all at the same time, we love and hate looking disabled?
Thank you for sharing what I thought only I experienced in the heat. Realistically, I know that others have similar challenges, but when I experience events similar to yours, I feel like I’m alone. I experience heat attacks and cognitive function loss and wondered if anyone had any idea that I’m not just uncomfortable, I’m lost in pain. I appreciate what you have done, here. Fibromyalgia has been incapacitating, and caring for a child with Autism and Sensory Defensiveness can be draining. Insensitivity of family members or neighbors adds to the sense of alone-ness. I understand the whole color of car and interior issue, too! I thought I was nuts for being sensitive, but I am not alone. Thank you, again, for sharing your vacation day one event – others may take things like getting a rental car for granted, but not I. Warm wishes! Oh my, no pun intended at all! Best wishes!
Try this: The rental car company told me that when making the reservations (through Hotwire, etc. or through the rental company) to say you need the car driven to the terminal for you, already cooled off. Remind the person at the counter, too. If you have any difficult, call for the manager. It’s hard enough to travel or to do millions of other things; find ways to make it easier and DO THEM! “Warm” wishes to you, too, Dawn!
Great article, I’m glad it finally worked out for you.
An overall cognizance of hidden disabilities needs to happen starting with our own Federal Government. The SSA, not to name any names (YES I am talking to you), needs to realize the person applying for benefits may not look disabled, but is in fact the real deal and should not have to force the individual to go through the hardships and time appeals process take. There needs to be a coding in your SS file that designates a walking, talking disabled person.
Now there’s a frustrating chore! Giving with one hand (ADA) and taking away with the other — or at least not giving — SSD.
Thank you for opening up. My father has MS and goes to great lengths to hide its effects. I liked this post so much that I created a link to it in my blog: http://disabilitycondition.info/?p=206.
Wow! I am SO honored you did that! As a solopreneur (and one with energy limits) things like that are hugely meaningful. Thanks so much for your graciousness..