Can you tell someone is a serial killer just by looking at them? Can you pick a millionaire out of a group of people all wearing the same exact thing? The answer to both these questions is a resounding NO! So why is it that people think that to be sick you must look a certain way? I am so sick and tired of being judged because I don’t fit peoples description of what someone who is as sick as I am should look like.
I have a few illnesses, RSD (Reflex Sympathetic Dystrophy), EDS (Ehlers-Danlos Syndrome), and CAV (Coronary Artery Vasculitis). The EDS is both Vascular and Hypermobility types. The RSD is full body.
There are days when I am just fine, days I walk with a cane, a walker or days I am bedridden. I can start out fine and suddenly lose my ability to walk. Such is the case last Friday when I was having a rather good day health wise.
I went to fill a prescription and while walking through the store my ankle suddenly dislocated and I couldn’t walk so my husband had to help me to the nearest wall to hold myself up against while he went and got me one of those scooters. Having this disease HURTS but like with everything else you gain a tolerance. Do I scream and yell and cry with my injuries? Very rarely. It happens so often that it hurts but it’s an expected pain. I refuse to cause a scene in public. So I popped emergency meds and carried on with my business, dropping off the scripts and shopping while they were being filled.
My husband and I find humor in everything we do. We were laughing about how slow the carts are and my inability to still drive them well. People of course were staring at me but then this arrogant bitch (yea I said the “B” word!) comes up to me and in a loud and condescending tone sticks her finger in my face and says “How DARE you take this shopping scooter and horse around on it when it is for the sole use of the elderly and handicapped! You should be ashamed of yourself and I demand you remove yourself from it immediately!” Now I am pissed, I would like to hop up and belt her but instead I am polite but to the point. I said “I am disabled and need this to get around the store.” I was biting my tongue and hoping she would let it go. She instead looks me up and down and literally sneers at me and says “You look perfectly fine to me. I’ve seen you laughing and goofing off with your smart alec friend here. The only thing I can see wrong with you is that you have too many tattoos and not enough common sense, decency and respect! Now I am getting the store manager!” I calmly said “go right ahead” (at this point, in my head I was gleefully pummeling her face! LOL!)
The store manager came and I was so bent, in pain and aggravated at this point that my husband proceeds to tell the manager what is wrong with me. Of course the manager has seen me shop here millions of times and since this isn’t my first injury he knew I wasn’t playing. Also my ankle was swollen and changing into its weird light kaleidoscope of colors. He told the woman I was entitled to the use of the scooter as it is for assistance to ALL the customers in need and it is not up to her to judge who is in need and he thanked her for her concern and sent her on her way, muttering under her breath.
I just can’t get over how people in this day and age continue to judge a book by its cover. Whats worse is that instead of politely confronting me to see why I was using the scooter, this woman automatically assumed I was just “horsing around”. Sadly this isn’t the first time it has happened to me and won’t be the last and that is most infuriating. I do not feel like I should have to walk around and explain to everyone why I DON’T look sick. I am annoyed that while I choose to find humor in my unfortunate physical circumstances, others feel that nothing is wrong with me because I choose to laugh instead of cry. It boggles my mind at how arrogant, self righteous and judgmental people can be.
So my question to all of you is “Has anything like this ever happened to you? How did you handle it” Please share your comments and stories below!
I wish you all good health!
Peace & Paw Prints!
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
Yes, this has happened to me. I was in Sam’s Club and headed to the check-out with my mother-in-law and sister-in-law when a very elderly man and his wife passed me. I was riding on an electric scooter and she was pushing him in a wheelchair. He said, “You have no right to take the last scooter. There is nothing wrong with you and my elderly wife is having to push me around.” Whoo Hooo, Dorothy Dunn let him have it. We just so happened to be on our way home from one of my extended stays in the hospital and the only reason I could shop at all was that scooter. Ma told the man that I had just recovered from a severe brain bleed and had a brain full of aneurysms and he was the one who should be ashamed for judging. She quoted several scriptures for him too. Charlotte and I were laughing so hard as she put the wrath of Dorothy on him, poor man. His wife was embarrassed and kept trying to get away and Ma stayed two feet on his heels. I must say I am glad it was her and not my husband because he would have used profanity rather than scripture. As we were leaving the store, the man and his wife saw me getting into a handicapped car. When they passed, he apologized. I know the feeling of….but you don’t look sick all too well too Dani. The most infuriating part to me is when my family tells me I am being lazy and to just get out of bed and get moving and I will feel better. After all these years, some of them still don’t understand that it is just not that simple. Thank you for sharing. I have really enjoyed and relate to your posts.
Well God Bless your Mom!! Some people are just so thoughtless and ignorant and they need a good tounge lashing! (Scripture based is always preferred over profanity based! LOL!)
Thanks for sharing!
Dani my love another FABULOUS article!! I really look forward to your next instalment. This kind of thing hapens to me a lot. I LOVE to dress in bright colours mainly and always try to at least put my face on in the morning so at least I look good on the outside. This does however I think make people think I am not for real. If I never washed and looked like a bag of rags I feel I would often be taken more seriously. Dr’s also say that because I am not over weight I do not look like a person who struggles with mobility. So maybe I should add ‘Eat more Pies’ to my list of things to do to be taken more seriously.
The best comment I ever saw about this was someone who was asked about using a disabled parking space as she did not look sick. The man asked her what her disability was and she replied ‘torrets so F**** off!’ lol
Rachael…I know what you mean! it seems like we should dress as crappy as we feel in order to be taken seriously, if they only knew that we try to make ourselves feel good by trying to wear a nice outfit or fix our hair or wear make up…and more importatly if they only knew what that effort costs us!!!
OMG…I despise ppl like that woman…they’re the ones who come up when I park in allotted D/A zones WITH my D/A sticker (mum has one too…) and go ‘your too young to park there, how dare you use someone elses sticker so you can be a few spots closer too the door…you could definatrly use the walk’…(yes…they have said EXACTLY that…) – my usual response is ‘I apologise sincerely that you cant see my disability. *then go into brief explanation of what it is*’ – they OFTEN go ‘well thats none of my business now is it..’ LIKE WTH…It was their business when they confronted me…
If I’ve hada gutful of ignorance and intolerance I will tell them I’m sorry my disability is invisible and say that they clearly need the parking spot due to their intolerance/stupidity/nosiness etc…its RARELY the elderly guy or someone else disabled who gets up me…its the healthy single mum with 2 kids or the smart ass 20-something male…
I hear ya Kylie, there was actually a woman who posted on her blog a while back that handicapped spots should be give to people like her, a mother with young kids, rather then the “disabled” because they are slow…WTF is THAT about! Ignorance is NOT bliss it is frustrating and quite alarming!
I can’t believe you didn’t get up and pummel her.. I would have if someone said that to or about Jeremy. When we go to the grocery store he drives the powered scooter and he gets some evil looks form some people, but no one has had the nerve to say anything. And he does love driving it, so to them it just looks like a kid who is playing. But, with him he has all the braces, so explaining to people that he has a disability isn’t too hard. I can see the stares from the old people though, so far none have had the nerve to say anything. Because I think they know, if they say something with me around, it might be them driving the scooter next time. I wouldn’t have had the self control you did.
LOL! Trust me Joe I am not ALWAYS calm. I don’t mind people asking questions but to off the bat accuse me is just insane! I live in Heavens waiting room where all the old people think they have exceptional rights and to hell with everyone else!
One day there will be the jackstick who says something to me, I won’t have anything out at that moment and it will be then that I hop up and knock them the fuck out! You can only take so much and pain really tests my sanity some days but I try to just step back and realize that while I suffer from physical disabilities they suffer from ignorance and in my book that is a far worse ailment!
I completely understand. I too have EDS along with neuropathic pain, which means that I constantly live in hell. I am only 25 but have had a handicapped permit since I was 20, which was just after I got out of the army. The problem is, I still look like I am in the army. I get a LOT of dirty looks parking in the handicapped spot, especially when I am in horrible amounts of pain, but I am not limping. One night, I had to make a run to walmart. I parked in the handicapped spot and entered the store under the vigilance of the greeter, who informed me that those spots are for the disabled. I told her that I was disabled, and she proceeded to ask me if I had a sticker. I told her to go out and check for herself if she had nothing better to do.
I kind of understand that to them, it looks like we are mocking the disabled, or taking advantage of others. I don’t really have any idea of a way to preempt this behavior, though.
Your story is another example of the ignorance that is projected at us with hositility! That greeter should have checked your vehicle first for the proper permit/sticker/plate, which would have saved everyone the embarassment of unecessary confrontation and explanation. If she didnt want to walk to your vehicle then once you advised you were disabled she should have ended the conversation there. If she doubted you she could have walked to the car then and checked.
The fact that we have to explain ourselves is so infuriating because we live with this everyday, we are OFTEN questioned and hate having to repeat ourselves, especially when we are in agoy and just want to get in and get out. Also, what about HIPPA laws? When is OUR privacy protected? Having to explain whats wrong for people to understand we are disabled is an invasion of privacy!
You are correct, there seems to be no way to avoid this and its so frustrating!
Thanks so much for sharing!
I wish you many pain free days!
P.S. Thank your for your service in protecting our freedom!
I know what you mean. I have lupus, fibromyalgia, and COPD. I try to stay as active as I can, but there are times I am in so much pain and have so much fatigue and muscle weakness that I can’t. I used to be a major volunteer for lots of organizations in my city. No longer much, at all. I still have people call to get me to do something. When I say I can’t, they say, “I heard you were at such and such and looked great, so I know you can’t be that sick.” It’s usually some event that I was at to help an old, dear friend and I may have been in terrible pain and on meds, but because I made the effort to look good and to try to go, it must mean that nothing’s wrong with me. I seldom make that effort any longer because I know what the outcome will be, but I think giving it up has not been good for me. I’ve actually had someone come up to me when I was having a rare good day and accompanying my husband to the grocery store, “I knew you couldn’t be as sick as you’ve been claiming to be.” What do you say? I’m sorry I’m having one of my rare days, woman? I’ll try to stay miserable all the time just for you?
I experience this ALL the time. I am a chronic pain sufferer. I have migraines multiple times a week, severe back and knee pain, and carpal tunnel syndrome to top it off! lol I am in the process of trying to find a diagnosis for my back and knee pain since I have never been injured and have tested negative for rheumatoid arthritis. My doctor is just calling it chronic pain at the moment. But because I’m not limping around crying all the time most people think that when I’m explaining what I’m living with that I’m exaggerating. But that’s only because they don’t have a clue what it’s like to live with chronic pain. It’s so frustrating and just adds to the stress of dealing with the pain. Sometimes laughing is the only way to keep going! All of us living with chronic pain know all too well what it feels like to break down in tears because of how overwhelming it can get. There’s nothing wrong with having a sense of humor to cope sometimes.
i have stage 4 glioblastoma, cancerous tumor of the brain. i get looks, stares and hateful comments all the time. i am on steroids that have packed the pounds on me, radiation made my hair fall out in a mohawk, yes i said mohawk! some days i walk ok and others i can hardly move it. so i dont look like a “cancer” victim cause im not grey, sick,skinny or any other “stereo-typical” descriptions used. i am sorry you have to endure this treatment dani, you have enough to deal with! hang tough! many hugs and much respect to you!
I have RSD (upper body), Fibro, and cervical spine problems from a whiplash injury. I haven’t had problems with people in public to the extent of this situation that you described, but I have had family members / friends tell me to suck it up if I tell them it hurts when they punched me in the arm playfully and ask them not to do that, etc. I’ve just distanced myself from these people that don’t want to understand my illnesses. I’ve tried to explain them to them and they just don’t want to understand and I don’t want to be surrounded by people who don’t care about me enough to try to understand what I am going through.
I’ve considered trying to get a handicap sticker for my car for when I go grocery shopping because it is extremely difficult for me to carry my groceries or to push a cart, but I have played these types of situations in my head and just don’t want to deal with them, so instead I don’t go shopping by myself unless it is just for a few things that will fit in the small baskets. If I have to go on a big shopping trip I wait until my boyfriend can go with me so he can push the cart and help haul the groceries, etc.