The saying “You Can’t Judge A Book By Its Cover” has a literal meaning for those of us with invisible physical disabilities and challenges.
When people think of the term disability, they mostly picture people in wheelchairs or those using walkers or canes. Those little blue signs designating special parking and larger (usually cleaner) bathrooms are distinctly labeled; wheelchair users can park or pee there.
These assistive devices symbolize to the world that the person using them has either a temporary or permanent physical disability. They are treated differently.
The summer before I started high school (in the dark ages before internet and iPhones) I had a major operation on both of my legs and had to wear two leg casts and be in a wheelchair for 6 months. It sucked, to say the least.
My best friend Stacie used to push me around the hallways at school and the mall on weekends. People would either stare or avoid eye contact altogether. People who weren’t that nice felt obligated to be nice because of the wheelchair.
I could sense people’s pity; being the object of pity is a powerless, crappy feeling.
Of course, I was only visibly disabled for a short time and cannot possibly understand what it’s like to be a long-term wheelchair user.
After I had the leg casts removed, I could walk and looked like a “regular” teenager again. My physical disability was no longer obvious and became an invisible disability.
On the Invisible Disabilities Organization website, they quote an SAAP 1994/1995 study that states, 1 in 10 Americans have a severe disability. Out of those with physical disabilities, only 74% use a cane, walker, or wheelchair.
Those of us with Invisible Disabilities and challenges have a unique set of challenges. For example:
I could easily fall on my ass in a slippery parking lot but rarely use a handicap space for two reasons:
- I feel guilty – What if someone with a wheelchair doesn’t have a place to park? I can walk. Am I just being lazy?
- I will be judged – I will get a dirty look, rude comment or accusatory note on my car from ‘REAL’ disabled people and/or their advocates.
I love this fabulous illustration by Amber from Colitis Ninja.
Although Amber’s graphic refers to Invisible Illnesses, people with an Invisible disability can easily input our own “What You Don’t See” at the bottom.
As a teenager, mine would have been:
- Scars on each foot
- Surgically implanted pins on each ankle fusing them in place
Today, I would add,
- Two leg braces up to my knees
- Hands that can’t write or do buttons
- Bruises from tripping
Tell us what people see and don’t see when they look at you.
If you are looking for inspiration, check out these invisible disability quotes.
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Hi, Lainie! I am a 50+ woman with an as yet undiagnosed form of MD. The first three years involved my arms and hands, then ten years later it struck my legs. It’s been 30 years now, and like you, I wear Allard AFOs to try and stay upright. I’m thankful to MDA for publicizing your site and look forward to reading your fashion hints and tips. Dressing ourselves is far from easy these days!
Hi Ida,
I am so happy to meet you & glad you found the website & me. Please come over to our Facebook page so I can see who you are & get to know you. Undiagnosed? I would love to know more.?
Hi Lainie, I just discovered you this morning, and look forward to following your blogs and shopping ideas. I am a fashionable older woman with my share of hidden physical issues, like arthritis. However, I have developed an inherited form of Macular Degeneration. My vision is getting worse as time goes by, and one of my biggest I fears is that I won’t be able to put my makeup on if I cant see my face. It sounds shallow, but I really care about how I appear to others. As of now, I don’t appear to be disabled. I have read a few blogs and seen some videos about how blind does a person have to be to use a cane. Surely, if you think you need it,you need it! However, the invisibility is gone. Good and bad.
Hi Lainie, I just discovered you this morning, and look forward to following your blogs and shopping ideas. I am a fashionable older woman with my share of hidden physical issues, like arthritis. However, I have developed an inherited form of Macular Degeneration. My vision is getting worse as time goes by, and one of my biggest I fears is that I won’t be able to put my makeup on if I cant see my face. It sounds shallow, but I really care about how I appear to others. I have read a few blogs and seen some videos about how blind does a person have to be to use a cane. Surely, if you think you need it,you need it! However, the invisibility is gone. Good and bad.
Hi Myrna,
I’m so glad you found me and the website. You do not sound shallow in the least bit. Most people want to look their best and it is hard when you have such great limitations. I get it . I hope you subscribed and joined our tribe as I think you will find some tips you can apply to vision disabilities. I will be posting a video of a friend doing her makeup with extremely limited dexterity and hand function. Where there’s a will, Rhett’s always a way right? ?
I am a 50 year old lady who survived a major stroke 4 years ago leaving me with left side weakness so I have to wear an afo on my left foot so when I put weight on it my foot doesn’t roll and collapse under my weight I have a very bulky afo it has been the only type that’s allowed me to walk the best without rubbing and getting sores on my ankle it does however pose a huge issue when shoe shopping and at the moment boot shopping most often I leave the store empty handed and feeling very sorry for myself i have no use of my left arm either thanku for your post refreshing to have this being discussed and feeling not all alone thanku angie
Hi Angie,
Welcome! I’m so glad you found us. I know how hard it is to feel positive when you can’t find shoes and your body doesn’t cooperate. I see you sent me a private email. We can find something together that works. Don’t forget to follow our Facebook or Instagram pages.
Lainie, I am so enlightened with your web site/blog. Tamara Smith from Allard sent me your story. I was a very active healthy woman, wife, grandmother retired senior living in Florida in the winter and Vermont in the summer. Life was so good, I was blessed with a terrific husband and our two doggies. I had troubling back problems for years but in 2014 needed back surgery. Immediately after surgery the pain was worse, my peripheral nerve was damaged kn the surgery. I had drop Foot and couldn’t walk. I had never heard of Drop Foot and was in such denial and anger. It was a horrible few years, working on getting the pain under control and excepting my prognosis that this was permanent. Fast forward to 2018, I’ve come a long way discovered Allard braces…and learned to “love my foot”.
I’m now 76 and your blog is all about strong, bold amazing young women…I love it. I’ve such discovered your site and am learning so much from you all amazing young women. Thanks so much, I’m definitely in a different place than you but would be happy to a help to any other “seniors” who might need to share. Also I do use my handicap sign, I loved it when I get out of my car, I feel I look pretty good for my age, not the typical perception of many who use the parking places. Not saying there are many who need it, but I see so many in Florida who may be abusing..but I hate to judge . Thanks for listening to this way to long blog!! Sandy 3/24/2018
Hi Sandy,
I am so happy Tamara sent you this way & that you wrote. It sounds like you found acceptance with being perfectly imperfect, and that’s awesome. I would love your help spreading the word about the website to anyone interested. Thank you for taking the time to write. Please visit the Facebook page and/or Instagram & reach out anytime. Lainie. There are buttons on the website that will take you there. Happy Holiday this weekend. Lainie
Hi! I am Evamarie. I am 56. I was diagnosed with CMT 1a in my 40s. After I was diagnosed, My Dad, brother and son got tested and found out they had it. Years ago this illness wasn’t visible at all! A slight gate problem but now are I use a cane because I have fallen numerous times due to foot drop.
Hi Evamarie. Welcome. I am so glad you found us. I totally understand the progression of CMT 1A and used to fall a lot too. Be sure to follow the Facebook and/or Instagram links on the homepage of the website ?
People see a “healthy” almost 50 yr old woman in a power chair one minute and up walking with trecking poles the next. I have CMT Type 1c. I have my good moments and my bad.
Thanks for sharing Charlotte ?
Hey Lainie – Thanks for sharing such personal and important information. I work with people with all types of disabilities as a custom wheelchair specialist at a home medical company. And, this subject comes up from time to time. I have some patients who have congenital problems that you cannot see like heart problems or muscle weakness. Just looking at them you would have no idea. Some of them have to use power wheelchairs as their only means of mobility. One sweet girl I provide chairs to has said that people in her school call her lazy. And that she just uses a wheelchair for attention. Very sad because she would love nothing better than to get up, walk, and avoid as much attention as possible. Thanks again!
Thanks Scott and for the work you do.
When I first got my braces which significantly improved my gait (and I usually hide under long pants), I asked my husband what he thought and he said,”I think you’re going to get dirty looks when you park in the handicapped space now.”
It’s so true. Thanks for sharing!