Look Beyond The Surface, A Plea To Those With And Without A Disease
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Profile photo of Devin Garlit

Recently, I came across yet another story from a friend with MS about how they were discriminated against because of their handicapped parking placard. This is such a disheartening thing to read, and it’s something I keep hearing more and more about. You’ve no doubt heard or experienced it yourself: a nosy person sees you parking in a handicapped spot, can’t mind their own business, thinks they are the righteous hand of mob justice, and then confronts the person using the spot, never considering that the person, despite what they see, may suffer from an invisible illness. It’s devastating to those of us it’s happened to. With this scenario playing out time and time again, I wanted to again plead with folks to please look past what you see on the surface.

Of course the issue extends past handicapped parking. I was also recently reminded of a person who gave me one of those classic, tilted head responses of “really?” when I explained I was on disability because of MS. Yeah, yeah, yeah, but I look so good right? Many of us battling invisible symptoms have to deal with this on an almost daily basis. The tilted heads, the questions, the looks of disbelief. Trust me, I can’t work, I’ve tried. No matter what you think, not being able to work is a lot harder than actually working. Always remember, if you see me, in person or even in a picture on social media, that’s me at my very best. You don’t see the aftermath (when I’m paying that exorbitant MS Tax) or me at my worst.

It’s not all about invisible symptoms either. Even more problems can occur when we are using a cane or wheelchair. Especially when we are on the younger side. It can be a very unexpected sight for many people, a younger person in a wheelchair or with a cane. People want to gawk, they want to stare. They also want to know why. I was recently using my cane and a man came up and asked me, “rough motorcycle accident?” and then I explained the MS. He was embarrassed and said that because of my beard he assumed it must have been something like a motorcycle accident. I actually got a good laugh over that. My appearance doesn’t fit the mold of what people think MS looks like. That’s the thing though, there is no MS mold, we’re all little snowflakes in this disease, all very different. Perhaps more than any other disease, MS has a wide range of symptoms and demographics.

This isn’t only an issue between those of us with MS and those without. Because of the wide variety of symptoms, there can sometimes be issues amongst ourselves. A person in a wheelchair may think that another person with MS has it easy because they can walk fine. I’ve seen this cause issues among MS groups and it’s crazy. We of all people should recognize the invisible nature of this disease and that just because a person isn’t in a wheelchair, doesn’t mean they aren’t suffering. We have to remember that no matter what symptoms a person has, we’re in this together.

Along that same line, let’s also cut some slack to those who don’t understand. That guy who asked about a motorcycle accident, I laughed it off but used it as a chance to educate in as fun a way as I could. The man simply didn’t know better (really, why would he?). So I make this plea, as we approach the holidays, for everyone to look deeper than what they see on the surface. Our world already faces a lot of problems because people are judgmental of what they see on the outside. So I urge everyone to do their part, try not to judge, try to educate (remember, humans are a curious bunch), try to look below the surface and helps others to as well, let it start with us!

– Devin

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24 comments on “Look Beyond The Surface, A Plea To Those With And Without A Disease

  1. Profile photo of MarineMike MarineMike says:

    Devin,

    Great article. I have been dealing with this type of issue since 2005 when I was first diagnosed. You see, I’m in the United States Marine Corps. With belonging yo a group of Alpha Males any sign of weakness means that either your just not giving it 110% orv your a “b*tch.” Aside from my Commanding Officer (sorry for those who don’t know about the military…the head boss man), who has a very limited knowledge of MS, no one else knows anything about it.

    Trying to explain why you can’t do something when you look COMPLETELY HEALTHY has almost caused me some fights and lost me some friendships. MS, what I consider pandora’s box of what “could” go wrong when no reason, sign, or precursor symptoms show.

    Thanks for a great read,
    Mike

  2. Profile photo of Devin Garlit Devin Garlit moderator author says:

    Thank you Mike! I can certainly understand how hard that must be. The invisibility of our symptoms so often causes us our biggest issues. Not that I want to look bad, but having something a bit more visible would help with dealing with people! Thanks so much for reading and sharing your thoughts, super appreciated!

  3. Profile photo of Lakiee Lakiee says:

    So, sorry if I broke a rule, as I just read….That I was not suppose to change the topic/subject!

    Sincerely,

    Lakiee

  4. Profile photo of Lakiee Lakiee says:

    Hi there,
    I had an experience where I was seeing my MD for something and I forgot to put my Handicap tag on my mirror…When I came out of the Dr. office there was a note on my windshield….It read…”You are so inconsiderate parking in a Handicap parking space when there are others that possibly need this space!”
    So, I walked back in the doctors office and asked the patients in the waiting room, if anybody placed a note on a wind shield out side here? Apparently the person was not in the doctors office, and saw my car parked there and left that note.

    If I may mention something else that has nothing to do with Handicap parking….I moved to NC from SC about 10-months ago. After going to the same Neuro for 17 years….8 yrs ago I was diagnosed with MS. I see this Neurologist here and she was with me for a total of maybe 10-minutes, our first visit! She tells me I need to go to the hospital and have an MRI in 2-weeks. So in about a week from seeing her I new I was relapsing, so I went to the ER and told them I have MS and game them the name of that new Neuro. And she did approve of me having IV fluid 1-hr. X’s 3 days. Well, needless to say, I was feeling So much better! 🙂 When I go back to this Neuro, she precedes to tell me that my MRI did not show any lesions, so don’t think your going to have the IV’s again!!!! Trying to make this short, I went to see my MD and also my Psychiatrist and told them what this Neurologist told me, that the MRI, showed no lesions. Both of these doctors told me, that she should know that there are times when the lesions won’t show up and she didn’t know that?! So I am getting a CD of my MRI’s from my doctor I had for so many years and reports with them…..I am taking the info to another Neurologist in Wake Forest who Specializes in MS, so I have the proof in hand for her!. Thank good-ness I have enough Rebif 44mcg. for 3-months!
    Well, was wondering if any of you have ever heard such a thing?! Of course all this stress put me in a bad depression state for about 2-3 wks, couldn’t eat, go outside….just cry in awful pain with the depression.
    Thanks for your patients in my situation that I experienced!
    Truly-Lakiee

  5. Profile photo of Devin Garlit Devin Garlit moderator author says:

    Thank you Lakiee! Sorry to hear of your experience! A good neurologist should absolutely know that just because an MRI didn’t reveal any lesions that it doesn’t mean you don’t have MS. While that is a common way to diagnose MS, you can still have MS without visible lesions. Also, not all MRI are the same. The standard MRI we get can certainly miss things that a Research level MRI can pick up. It may be that this neurologist isn’t an MS specialist, which is common. If possible, I always recommend looking for someone who specializes in MS (your local MS Society chapter can help find you one, though it sounds like you found one!). Unfortunately, your experience is not all that rare! I’ve heard similar stories from many people! Hang in there and good luck when you visit Wake Forrest, that sounds like a very good move!

  6. Profile photo of Cece719 Cece719 says:

    I will just tell them my hoopie of a car is handicap so thats why I got the decal …lol

  7. Profile photo of MNugent MNugent says:

    Great article! My own neurologist wouldn’t put me on disability because she said that I was her healthiest paitent. What good does that do me when most all of my problems are cognitive & the only available/abundant jobs in my area require multitasking (which she told me I cannot do) or hours that I cannot work. I have a thirteen year old child and need to be there as my husband works full-time (often out of town). I have a new neurologist and hopefully will be able to get my cognitive issues addressed. I also have dealt with people not understanding including family members ,which, for me, is the most painful.

  8. Profile photo of Devin Garlit Devin Garlit moderator author says:

    Thank you MNugent! I’m glad you have a new neuro. There are far to many like your last one! Being their healthiest patient, does not mean you are healthy. And again, healthy should not be defined by your outside appearance. I’ve had cognitive issues at times that are way worse than anything visible that might happen to me!

  9. Profile photo of corgi9 corgi9 says:

    Hi Devin……Got a kick out of the motorcycle story….I bought a Harley Davidson cap just so someone WOULD ask me that question !…Also I was challenged by a “lady” one day about using a HP parking space as “you don’t look handicapped to me”…We both entered the same store to buy something and I went off on her in front of everyone. Don’t know who I embarrassed more…Her or myself.

  10. Profile photo of Devin Garlit Devin Garlit moderator author says:

    Thanks corgi9! Hopefully that “lady” will think twice about getting into other people’s buisness next time!

  11. Profile photo of kkcurtis kkcurtis says:

    I just had this happen to me; while I am used to the stares, I have never had a confrontation until last week. I was having a “good” day and planned on an afternoon with my daughters after a doctors appt. I had put my walker in the car because I knew that I would need it later, but at that moment my legs felt OK. A women asked me if I knew I parked in a handicap spot and I replied I knew, then she started going on and I asked her to look at my placard and see that that is my picture, I don’t cover it up for this reason. She still kept going on and I lost it and began yelling at her that I had MS, and at any moment my abilities can change. She got me so upset that of course the stress set of my MS and my legs began tingling. A supposed “good” day with my daughters ruined because of someone’s ignorance. I don’t mind the initial comments/inquisitions, but when I explain it to you, be quiet and keep your opinions to yourself. I wish we could post this everywhere so people might stop being so judgmental.

  12. Profile photo of DonnaFA DonnaFA moderator says:

    Hi kkcurtis, I’m so sorry that you had to deal with that kind of ignorance and lack of compassion. How about if you kept a few copies of an article like What is MS like?. If you ran into a situation like this, you could just smile, had a copy over and go about your day without them stealing your joy.

    Thanks for being part of the community. Please know we’re always here to lend support or just to listen when you need to vent. -Warmly, Donna (MultipleSclerosis.net team)

  13. Profile photo of Julie Julie says:

    I am to the point of being tired of telling people about MS, I know I should educate people but I’m tired of it. The last person that approached me, I told him I could give him my neurologists phone number and he could chat with him as to why I’m disabled.

    I’ve also had the urge to whack some with my cane. I pick my grandkids up from school. It is almost a competition to find a handicap spot. One afternoon I pulled up and all the spots (there were only 3) were painted over, signs removed. I spoke to the school, they blamed the police.

    A phone call to the police chief was interesting. He said the school did it. I asked him it was against the law to not have handicap spots. He said it wasn’t. Now this is a small town, very small but it’s almost all grandparents picking their grandkids up and we were all up in arms.

    I argued with the chief until I was sick of him. I did ask him if someone were to park in the handicap place at the grocery store in town that didn’t have placard or plate, would they get a ticket? No, it’s not illegal. He was just being belligerent with me by this time. Before I hung up, I did remind him of not only city laws but state and even federal laws made this illegal.

    I felt a little victory the next day as I pulled up to the school and saw the handicap places were back plus a few more. I’m sure I wasn’t the only one that called to complain but I still felt a victory for all of us. Although I still drive carefully thru town, not wanting to break any speeding laws
    and get ticketed lol

    There are plenty of people out there that are either ignorant or just plain rude. OK, I’m done with my rant on this subject. Sorry I took up so much time.

  14. Profile photo of DonnaFA DonnaFA moderator says:

    Hi Julie, While they wanted to be difficult, it seems your contact had some positive effect. It’s an awesome feeling to advocate for yourself and get results!

    Thanks for sharing your experience with us! -All Best, Donna (MultipleSclerosis.net team)

  15. Profile photo of Tony D. Tony D. says:

    Great post Devin. I have had MS for 27 years, and tick all the symptom boxes (fatigue, sensory, cognitive, urinary, spasticity, etc). But none of them are so bad the passer-by would instantly know I have MS. You’d have to spend an hour with me to see my struggle. So people don’t understand, recognize, or appreciate how I’m feeling.
    But like you say in the last paragraph, why would they? If they have no experience of MS, why should they know anything about it? Honestly, if we didn’t have MS would we spend any time researching it to discover how those who do have it are feeling? I don’t think so.
    So we should expect people to be ignorant. It’s a pain having to deal with it, but I try to brush it off knowing they don’t know any better, and not allowing it to spoil my day.
    Through no fault of my own, I’m ignorant of a lot of things. Ignorance about my condition is inevitable, and not something I should be be aggrieved about.
    Rudeness on the other hand…

  16. Profile photo of Devin Garlit Devin Garlit moderator author says:

    Thank you Tony D.! One think I started to notice a lot while I was thinking of this article, was how ignorant I could be at times. I sadly realized that I took part in some of the same behaviors I’ve complained about! Just writing this has made me more aware though and I hope others that read it will keep their minds open about anyone they see!

  17. Profile photo of 1j62tpv 1j62tpv says:

    I’ve had active symptoms of MS since November 1984 with an undiagnosed onset in December 1974. Since 1985 I have had extreme limitations in regards to walking. My initial fear was more along the lines of “is that guy drunk?”. I purchased a sturdy walking cane that I began to carry constantly. This resolved the drunk questions as well as the parking invisibility issue. I’ve since graduated to bilateral Canadian forearm crutches as well as scooters. I can’t always take the scooter but I always take my crutches. As soon as I park in a handicapped space I reach for the crutches both out of need but as well as being selfconcious of others staring at me to see why I am parking in a disabled spot. That never goes away, however the single and now bilateral canes stopped many of the “What’s wrong with you, you don’t look sick” Bs inquiries by snoops. I recommend getting at least a single cane for newbies in the MS arena. It will lend confidence to your mobility as well as stifle most of the ignorant nosey BS questions.

    I also take people to task in parking lots if they get snippy about abandoned electric scooters outside the stores scattered in the parking lots. I ask them to take abandoned scooters back into the store entrances so that the next user will have proper access to the chair. I am angered by people, handicapped or not while on the invisibility issue, who drive carts out to their cars and leave them there. In the summer the hot sun cooks anyone who tries to move it inside and in inclement weather the rain and snow is bad for the scooter’s maintenance. If the handicapped person walked into the store to get the cart to shop then they should unload the cart and return it to the store instead of abandoning it. Another accompanying person could then pick them up at the door after they return the cart themselves or have an able bodied companion or customer in the parking lot return the scooter for them. Most people are glad to lend a hand if you politely ask them.

    I often return my cart and then walk with my canes to retrieve one or two more abandoned carts from the parking lot in hopes scooter users get the message to be courteous to others and as appreciation for the store providing scooters to us to begin with.

  18. Profile photo of Devin Garlit Devin Garlit moderator author says:

    Thank you 1j62tpv! A cane is a pretty valuable tool, both for walking AND preventing people from attacking you!

    I applaud your efforts with regard to returning scooters. A great many people that complain about scooters not being available, are often the same ones who won’t return them. It feels like basic manners are less and less apparent in the world!

    Thanks for reading and for commenting, much appreciated!

  19. Profile photo of Marie T Marie T says:

    Recently I was in a handicapped stall in the ladies rest room and a women came in. There were three empty regular stalls available. She went on about people using handicapped stalls for no reason when people who really need them have to wait. How inconsiderate people are. Why don’t people read the signs on the he doors. I do not think she saw me enter the rest room with my cane,. But, even if she didn’t, I couldn’t believe she was making judgement on me behind a closed door. I kept my thoughts to myself as I hobbled past her to the sink. I felt sorry for her for her ignorance.

  20. Profile photo of Devin Garlit Devin Garlit moderator author says:

    Thank you Marie T. That situation is really mind boggling! How can anyone complain when they can’t even see who is in the stall? Forget invisible symptoms, this person is someone who wants to complain for the sake of complaining. I find more and more of those people these days!

  21. Profile photo of meissie47 meissie47 says:

    Wow!…You always seem to know just what I’m feeling or experiencing. All the things you said about the invisible symptoms and being on disability.

    I’ve been struggling so hard with thoughts of trying to go back to work as a substitute teacher while I’m waiting on my hearing for my benefits.

    Because I look so good and have so many good days. I feel like ” yeap girl you just need to give up and go on back to work”.But then when im NOT feeling Well I’m glad I don’t have to go.

    I’m riddled with guilt every time I go through good days and am not working. My profession was actually a hairdresser before quitting and sub teaching gor about 12 yrs after my diagnosis. So i know I DEFINITELY can’t go back to that.

    Please help I just need some encouragement. I’m so afraid that once I get before the judge although he has my medical records as proof he will look at me and think differently.
    Thanks

  22. Profile photo of Devin Garlit Devin Garlit moderator author says:

    Thank you meissie47! Don’t ever feel guilty because you have a good day or even just look like you are. Just because you aren’t working, doesn’t mean you aren’t entitled to feel good at times. You can even still feel good a lot but have MS cause enough problems to be unable to work. You said so yourself, you know you definitely can’t go back to work full time. You know that and I’m sure if asked you can’t explain the why. If anyone is entitled to a good day now and then, it’s people with MS!

  23. Profile photo of giraffe516 giraffe516 says:

    Some times I do take the c time to educate. Other times the frustration level takes over and I just can’t. I’ve been accused of using my grandmothers handicap placard, when I do explain what’s wrong I hear wow know what you mean…I hurt my….insert body part here…. it really sucks doesn’t it! Yeah it might but sometimes I wanna scream….living with an incurable chronic disease which has robbed me of so much sucks more! Lol. You recovered…I never will!

  24. Profile photo of Devin Garlit Devin Garlit moderator author says:

    I certainly sympathize giraffe516, it’s tough. As they say, you don’t “get” MS until you get MS. There may be nothing worse than someone saying “I know what you mean”!

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