When you have MS, be aware of the impression you leave on others
What kind of presumptions might people make because of you?
You know what they say about assuming?
You don’t?
Well, I just assumed that you did, so I guess the joke’s on me.
I was going to start this column off by saying that people make a lot of assumptions about the disabled, but now I’m not sure that “assumption” is always the right word. An assumption is a belief that’s based on little or no evidence. That does happen sometimes, but I’m starting to think that many people are actually making presumptions, because there is some evidence backing up their guesses.
We all leave an impression on others
Like many — I won’t assume all — people with multiple sclerosis (MS), my ability to walk is affected by the disease. Since my diagnosis, I’ve used a cane, a rollator, and am now in a wheelchair full time. With each type of mobility aid, even when all I had was a noticeable limp, people seemed to make presumptions about how to interact with me based on their past experiences with other disabled people.
The interactions sometimes begin with the person telling me they know someone else who uses a wheelchair and is able to [fill in the blank]. My normal response is to smile, nod politely, and mumble a word or two of (sometimes ungrateful) gratitude. If I’m feeling bold, however, I remind them that the other disabled person they know isn’t me. In all likelihood, our similarities begin and end with the wheels on our chairs. Even if we both happen to have MS, our similarities might reach the armrests, but that’s about it.
Another common presumption people seem to make is that they shouldn’t interact with me. They may be uncomfortable if their past dealings with the disabled were unpleasant. I had a hostess at a restaurant seat me toward the back because the last guy in a wheelchair had yelled at her for offering him a table up front; apparently, he felt it implied that he wasn’t capable of going any farther.
In these cases, which I like to think of as “disabled post-traumatic stress disorder,” I usually go straight to a reminder that, despite our similar means of getting around, the other guy wasn’t me.
I try to keep that in mind every time I’m tempted to be rude, because I’m always someone’s “last guy in a wheelchair.” If I’m going to be the evidence behind someone’s presumption of how to treat the next disabled person, then I want to be good evidence. Being disabled by the symptoms of MS might be the reason for my being short with people sometimes, but it’s not an excuse.
It’s not fair, but our disabilities and assistive devices seem to amplify our emotions and make us more memorable. Someone else might have dealt with 20 grumpy customers on a given day, but the guy with the cane who grew frustrated because he kept dropping things is the one they remember. I’m probably guilty of negatively shaping a few perceptions about people with MS and the entire disabled community. I’m sorry if you were “the next guy in a wheelchair.”
How do people remember you? What assumptions, or presumptions, do they make about you? Perhaps even more importantly, what presumptions do they now have because of you? Please share in the comments below.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Jan Fitzgerald
I have primary progressive MS & walk with a stick or poles & use an FES walking device.
I was on my holiday enjoying the music (or more likely just swaying) when a complete stranger came up to me & said "I am so pleased that you can still dance'. Why did she feel the need to comment? I would have preferred it if she had said I was a lousy dancer. I remembered to be polite I just smiled politely. But my friend who was with me said I gave that woman a withering look, something I'm quite famous for apparently.
Benjamin Hofmeister
Thank you for that Jan! I wore an FES device when I could still get around and the best moment was when a lady at the grocery store saw it and asked if I was under house arrest. I should have thought of something clever to say, but words escaped to me at the moment.
I have been known to give withering or dirty looks too. Usually I don't realize I'm doing it and then my wife will tell me, you just made that face out loud.
Maureen Brennan
It’s been about 4 years now using a wheelchair. When I am out and about I talk to everyone, I ask for help if needed and try to exhibit a feeling of being comfortable and accept my situation. With the little children I ask them hop on I’ll give you a ride they laugh and their moms also. I find people are very kind and when they ask why I am in a chair I tell them directly MS. I also tell them I was a bus driver for handicapped children for 26 years. They seem amazed plus I tell them to enjoy life to the fullest because we never know what’s around the corner. Always stay positive trust in God and all will work out. I thank God every day for the things I can still do. Go forward never look back.
Penelope Mitchell
I love your attitude and it’s the only way to go, literally. My diagnosis was in 1992 after years of wondering why I had temporary strange symptoms going through my body that because I thought my family to be overprotective I didn’t always share, and that was because I didn’t want to be dependent on anyone. However, I wasn’t able to hide all of my symptoms and had repeated visits to the hospital only to have my mom told I had possibly a million other incorrect diagnoses including rheumatic fever and once tuberculosis which I did have a positive skin test for, but never a positive sputum which is the ultimate determinant, I understand. Instead I had a pulmonary infection that I can’t remember the exact name of, and was probably caused by my weakened immune system. At 45 or so I found a pulmonologist that knew his stuff and when he was able to correctly tell me I had asthma, I confided the other symptoms I had and he referred me to a neurologist immediately. She diagnosed me without any tests showing me a brochure that she probably had printed in her office (joke) because it was like I had been interviewed to write the brochure. Gotta say it was both a relief and scary to finally know what was going on with me all of my life. After the female doctor convinced me that I had MS, my first silly question was whether or not I would be able to wear my high heels 👠 that I hardly ever wore. She laughed and told me to do whatever I felt comfortable doing. 32 years later I haven’t worn any high heels, but I love my comfort shoes and when a friend asked if I was ok once because I was unaware that I wasn’t walking in a straight line, I took her advice and started using a cane which is something I don’t leave home without it. Still wanting to be independent, i started researching MS and the written suspected causes and remedies wherever possible. I learned a lot and try to stay away from the suspected problems that make MS worse and that includes a lot of allergies both good and environment. Everyone is different, but learn to be your own self advocate and be aware of the things that can possibly make you have a negative reaction. I take no medication for my MS and my doctor tells me that he’s impressed with how well I’m doing without prescription medication. Nothing has changed unless I start eating or expose myself that I know aren’t good for me, and when I get back on track, I’m fine, or at least back to where I was previously. Being my own self advocate was influenced by doctors once telling my family not to allow me to walk, after an episode of collapsing. However, family sat me in front of the tv when I got home and I will be forever grateful to Jack LaLaine the exercise guru on tv who said if you don’t use your muscles, they will shrivel up and you won’t be able to use them. Paraphrasing. After I heard that, I started exercising secretly and was soon able to walk again. Listen to the doctors, but you should also follow up with your own research.
Benjamin Hofmeister
Hi Maureen! I like the questions and interaction from children too. The questions are always asked with genuine curiosity and not a hint of morbid fascination, or pity.
David Bottomley
If anything I tend to be very understanding of others . Fortunately I’ve never come across anyone who is in anyway hostile or rude but I can tell that many are unsure or a bit nervous (maybe scared) about knowing how to interact. So, I tend to be smile and act like a nice guy.
A lot of people are actually very nice and helpful.
Not sure what I would do if I came across a rude or hostile person- perhaps just smile and be nice with the intention of annoying or embarrassing them
Benjamin Hofmeister
Thanks David! I definitely have not run into anybody hostile yet and really, very few Ruder and sensitive ones. Like you said, the majority of people seem unsure, or a little apprehensive about how to interact. I worry that this is because of their past experience with people who disabilities. Like you, I'm determined to not be one of those bad past experiences.
Debbie Pietila
Hi Ben, I always enjoy your letters and this one is so perfect! I couldn’t agree more and you have a perfect way of getting right to the point clearly. Thank you. It really helps me because I get so frustrated at times when people assume things about me! Your article helps me realize that perhaps I also am assuming! I really don’t have any idea what others think or assume or presume. All I need to remember each day is to try my best to treat others as I like to be treated myself. If I can keep this at the forefront I will be happy. No matter what differences there are everyone deserves respect.
Benjamin Hofmeister
I think you summed it up perfectly Debbie! All we can do and really the best we can do is to do our best and treat others as we would want to be treated. Thank you for sending that.
Kathleen Glasser
I think since I have been using a cane, people always help me. They always have because before I started using a cane I had a limp. People would ask me why am limping. I mean complete strangers, which I found a little rude. I was always polite and did not let it upset me. I am grateful I started using a cane, it has prevented a lot of falls. I have had MS for 38 years. I think someday I will need a walker, also am 67 years old. If I do need one I will go with the flow, it has worked so far.
Benjamin Hofmeister
Thanks Kathleen!
Mike McGown.
I'm not using a cane, walker, or wheelchair. I've fought with my disability and got it to come to a draw. It didn't beat me but I haven't won either. I've adapted to it. I don't walk normal but I do walk. It way appear to others that I'm drunk. I don't let it bother me. When I do interact with people that know I have MS they usually ask if it hurts. I just explain that it's more like fatigue than pain. That for me to walk across the room it takes the energy and effort it would take them to run across the room. Low energy is the worst part of my disability. Then of course there's the agility issues. I can't run with the grandkids but I still play with them. I haven't given up on my projects. I'm still building our new house by myself. The main structure is up. I just have to build the interior. Lifting materials and moving them around are stressful but I just forge ahead. People see my determination and see that the disease hasn't changed my attitude too much. I guess they find some inspiration in me. Sometimes when I meet someone new and they find out I have MS they usually tell me they know of someone else with MS. I have to tell them MS affects each person differently. I have the Primary Progressive version that doesn't have the remission and recurring symptoms. It's just crappy all the time. That may be a blessing sometimes. I know it's not going to be a good day then suddenly I'm sick and in pain or suffering in the hospital. Sometimes my temper flares up and I have to reel it back in. Things aren't easy.
Benjamin Hofmeister
Thanks for that comment Mike! No, things are definitely not easy and I have to check my temper too. I'm also looking at building a completely accessible house. All one level will be key, wider doorways, a perfectly functional bathroom and kitchen, Etc.
Maureen McDonald
When I am at the YMCA with my cane, I am always asked if I had a knee replacement. They seem like they want to start a conversation. When I say I haveMS theyusuually say “I’m sorry” or they turn away.
Benjamin Hofmeister
Hi Maureen. I was once steadied by a helpful bystander as I was crossing the street. It turned out she thought I'd been drinking and when I told her I had MS she recoiled like it was contagious or something. I remember thinking, wait can we not go back to pretending I was drunk?
Tru
Hi Benjamin. It's always nice to read your stories.
Well, for me it was an assumption I made that left me thinking if at all I am a 'good human being'. After I joined the MS Association of Kenya, we were pleased to be hosted at a home visit by one of our delightful members. The host, who I now know had lost only functionality of her lower lims, was seated in a wheelchair. I arrived late, not by intention, and went round greeting everyone by handshake. I was perplexed on how to greet the host. Of course, at the time, it never crossed my mind that she had the ability to reach our her arm and shake mine. In my confusion and mistaken assumption I touched her hand reassuring, at least I would like to think so, only to realise that she could stretch out her arm. I was embarrassed and felt ashamed for misjudging her. She was rather delightful and unfazed. She gave me a smile and moved on as if I had done nothing.
I left that meeting thinking how terrible it must have been for her to be so pleasant and so casual about that incident. It left me wondering how many people had made such hurtful assumptions for her to be so immune. I vowed next time to be better at such interactions with any person with a disability and not to make assumptions on one's ability. I hope not to forget my mistake. Next time, you never know, as an MS patient, it might just be me on the receiving end and I would like to be treated with dignity.
Keep writing Benjamin. We'll keep reading.
Benjamin Hofmeister
Thank you Tru!
Don't be too hard on yourself. You made a presumption, it didn't hurt the other person and you came away so much wiser. I've done the exact same thing more times than I care to remember and I can only hope that I learned from The Experience like you did.
Shara Sand
Thoughtful piece. My experience with my father (severely disabled by MS) and myself (mildly disabled) is the assumption that this run a wheelchair lack cognition and self agency. Eg. what would the gentleman like for dinner? Pleas ask him. Does the gentleman need any help greeting settled? Pleas ask him.
I have grown weary educating others about my lesbian sexuality 45 yrs), my MS (32yrs). I want others to feel a responsibility to educate themselves outside of their own narrow world.
Benjamin Hofmeister
And that was a thoughtful comment Shara! Thank you for making it. I sometimes think that I have enough on my plate without having to educate the general population.
Bonnie Porcelli
People often treat me as an invisible being. Disability makes many uncomfortable. I do not want to be admired for what I do. I want to be treated as I treat others.
Benjamin Hofmeister
Thanks Bonnie! I feel invisible sometimes too. It's like I get in the wheelchair and disappear.. except when I'm rude, or sarcastic. Then everybody sees me and remembers.
Nancy Bergstrom
I'm an introvert, but with MS, I find it best to engage first and state things up front. For me, that is...
In elevator, or a door, i may say go ahead please, it takes me a bit of effort to start walking,
at a restaurant, I need a table please, booth is too difficult for me to manage, or may I have a chair with arms
Doors, please let me know if you want to assist, I need to adjust my balance.
Being assertive is a good thing, not demanding, just matter of fact. When you state things as a need, be specific, be direct, be clear. Its helps those responding understand how they might help.
Benjamin Hofmeister
You're right Nancy, assertiveness and being politely Direct are key. They are also difficult for me sometimes, but I'm working on it.
Nancy Bergstrom
Another thing... I cannot carry on a conversation when walking. I have to apply all my attention to walking with my crutches, canes, or rollator. I'm not listening or responding with any depth. This is just me, others might feel the same check with them.
Benjamin Hofmeister
I'm the same way! My wife tells me that she can tell when I'm struggling because I stop talking. I need a t-shirt or a sign that says I'm not being rude and I'm not angry. If I stop talking it's just because I'm trying to concentrate.
Karen J Rippens
I'm still using a rollator. I am most often greeted with the presumption that I need help, like getting through doors. Often this results in a hazardous situation, as I lean my back on the door to push through it. When the helpful person, however well meaning, opens the door, I lose my balance. It would be so easy to get angry, but I try instead to be gracious, saying thank you, but also conveying with my eyes that it would have been better to ask first.
Benjamin Hofmeister
That's pretty much my Approach! I do try my best to be appreciative, but I'm sure that my expression sometimes says otherwise.
Phillip Harvey
8 years on from my PPMS diagnosis I have arrived at the walking stick / walking frame stage, depending on circumstances. I find, almost without exception, that people of all ages are invariably kind and helpful when viewing my disability. In response I always express my gratitude and which is often heavily laced with a joke about myself - usually well received!!! To be honest since becoming disabled my view of humanity has improved immensely. So that's one bonus MS has unexpectedly brought me.
Benjamin Hofmeister
Thanks Phillip! I too think that the majority of people intend to be kind and helpful. I hope that I display the same sort of attitude. I worry about setting the wrong sort of perception of handicapped people.
Diana Pullos
Hi Ben, I use a lightweight mobility scooter while out of the house. I have not come across anyone who is hostile or rude as they seem to stay far away from me obviously. I have so many people look at me and jokingly say i wish i had one of those (they wouldn't if they knew what it came with!). When i tip it over (more often than you would think) people dash over to help. They kindly ask HOW they can help rather than just grabbing me as i could be weight bearing on that arm that they're grabbing. One big strong man once just picked me up off the road and stood me upright. It was wonderful :) But mainly i notice that if i am struggling that the able bodied don't notice and walk past but the disabled stop to offer assistance. its bloody marvellous.
Benjamin Hofmeister
Thanks Diana! I think that when people see me in my wheelchair and say that they wish they could sit down all day it probably irks me more than it should, because I've been guilty of that in my pre-disabled past. I met another Soldier once who had lost both legs to an explosion and was getting around on a set of very nice Prosthetics. I remember thinking that I should say something and made the dumb comment that since I had bad knees and ankles I wished I had those state-of-the-art artificial legs. He was very polite, but informed me that he would do anything to have his real legs back. That moment has haunted me and makes me almost hyper aware of those sorts of comments. Hopefully it's made me more understanding and forgiving, but that's probably not always the case.
S. Dean
I'm where you are, Benjamin. When I could no longer lift my left leg, I went from limping, to using a cane, to a walker, to a power scooter and now to a power wheelchair most of the time. What bothers me sometimes is people assuming that because you're in a wheelchair, all of you must be disabled too. One time while entering a hospital, I held the door open for myself and a nurse yells out, "Good job!" as if I'd performed some feat of magic!! I would have preferred she hadn't said anything. Just treat me like a normal person who happens to need a wheelchair. That's how I see myself. I know that as someone else posted that people may not know how to react to people with disabilities, but maybe we need to teach people that it's always best to assume the best and go from there. It may take some time to get people to think that way but it works out better in the long run.
Benjamin Hofmeister
Thanks for the comment! When I taught couple different Army courses between tours, I would often tell my students that I would treat them like competent adults until they proved me otherwise. I thank you hit the nail on the head regarding people in wheelchairs or with other disabilities. Treat me like I'm just another person until I ask for help or show an obvious need.
S Marc
I maintain a positive attitude and always make eye contact when interacting with others. I realize that, whether I like it or not, my demeanor will impact how others will interact with others in wheelchairs. If I am comfortable in my own skin it sends a message that I am a regular dude who happens to use a wheelchair. It drives me nuts when wait staff or other service professionals assume that I can not advocate for myself. They speak to my wife rather than directly to me, as if being in a wheelchair has "spread " to my ability to speak on my own behalf. My wife has learned to hold back and allow me to take the lead. However, when I am fatigued my wife will take charge, which is fine with me. I don't have the energy to care about what assumptions others make about me. It's my choice to be out front or not.
Benjamin Hofmeister
My wife and I were talking about that exact thing after a trip that included a lot of meals in restaurants. Occasionally, people won't speak directly to me as though I'm mute, or my inability to walk has affected my ability to understand. However, most of the time, I like to have her and the kids in front of me so I can see everybody and she is the first person to be addressed and it's not quite the same thing if a waiter Etc continues to look at her for directions. I think I was a little too sensitive about this before, but now I think I'm a little more aware of when I'm being ignored deliberately.
I like what you said about a positive attitude and maintaining eye contact. I think sometimes that I let my natural assertiveness become disabled when I did. Not speaking up or being assertive just invites people to treat me as though I can't speak for myself. I'm working on it, but I still have a ways to go.
Mark
I really enjoy your sense of humor. Thank you for keeping that upfront. Good content, as always! Very grateful for your articles.
Benjamin Hofmeister
Thank you Mark! I don't really know where I'd be without a sense of humor. I often feel that if I couldn't laugh at this sometimes, especially when it deserves it, I would be lost.
M3_OCpimuepsilon
Thanks again, Ben, for your apt columns. I've certainly raised a lot of concern, sometimes hostile "concern" in many establishments. I am not wheelchair bound but my extreme heat sensitivity makes me have to sit/lay down in a lot places, twitching horribly with arms and legs flying into the air., unable to breathe or speak. This causes the average person to just want me to go away and be out of their site. However, it was so uplifting, when at a climbing gym, another woman with MS came up to me - understanding my strife - and suggested I try one of her MS tools (peppermint oil). Her idea hasn't worked for me, but it was wonderful that the impression I left hadn't scarred me in everyone's eyes. On the other other hand, my last boss also had MS, and she seemed to hate me for giving in and seeking medical retirement. Her hostility slowed the retirement process though I needed it so badly, loosely most of the math brain I'd been hired for and going blind at regular intervals...
Benjamin Hofmeister
Thank you so much for that! When I was in college I had a job at a restaurant waiting tables and now, while I am a generous tipper, I feel like I have a better understanding of the job and what to expect. I can tell if a waiter is having a hard time and don't take it out on them. I can also tell if the service is genuinely poor. That seems to be the case in other people with MS like your former boss. For the most part I would rather have advice from someone with the disease, but there are definitely cases where other people with MS, or other disabled people are just making things worse and I hope I never become one.
Pamela Howerton
My thoughts on this subject are like this.
I have been lucky to not have any negative actions or reactions. All I can say about how people respond to people with disabilities is to remember to not take it personally. The rude or uncompassionate actions or reactions are based on someone’s knowledge and their own confidence in themselves. Their behavior could be a reaction to how the person with the disability is acting toward them or portraying themselves. All I can say is not to take it personally and to always portray a persona of confidence. We just need to choose to enjoy the journey we are on by finding the positive.
Benjamin Hofmeister
Thanks Pamela! I read something recently about people that start conversations with the disabled with if it was me, or have you tried.. The premise was that it's part of human nature to see someone struggling with a disability, or an illness and feel fear wanting to believe that it couldn't happen to them, but if it did, then there would have to be ways to get over it or get through it that the victim hadn't thought of yet. Knowing what's behind some of the words that make me roll my eyes helps a lot.
Christopher C Seifert
Your column is great. I look forward to it. Thanks
Benjamin Hofmeister
Thank you for reading it and for taking the time to comment!
Lynn Miller
A lot of presumptions are made about those of us who have "invisible" MS and do not use a wheelchair or a cane too. My heat sensitivity, fatigue, cognitive impairment, balance issues, and others are difficult to deal with and misinterpreted by others, even friends and families. Parking in a handicapped spot during a heat wave, I've been yelled at. Declining social invitations due to fatigue has resulted in people just not inviting me again. And of course, the frequent "Oh, but you look so good! Are you sure you can't come?" is particularly distressing because it makes one feel as though others think they are dishonest and faking their illness. I have actually considered buying a cane and using it so that people will believe that I am disabled.
Benjamin Hofmeister
You're so right Lynn! I chuckled at your comment about getting a cane so that you'd look disabled. Get one as soon as you need it, but make sure it looks like a proper cane. When I first needed one, I didn't want a medical-looking cane, so I got an Irish shillelagh. I remember someone asking me why I was sitting down and resting in the middle of a short walk. I told them it was because I had MS and then asked why do you think I use the cane? They replied that they didn't know I had MS and thought I'd just carried the cane to look cool.
Patrick Burke
Its the hidden disabilities that people don't see that need to be explained. Bad memory, dropping things and picking something up and that is what makes you memorable in a possibly bad way. A happy cheerful disposition creates a good impression
Benjamin Hofmeister
Great comment Patrick! I sometimes wish there was a sign that hung above my wheelchair listing all the invisible symptoms that people didn't see. Unfortunately, it would be a big sign and I doubt anyone would actually read it all.
Ginny
Great topic and great read, as always, coming from you, Ben. Good 'food for thought', as I recall some things that people presumed or said to me. There has been the classic "You don't LOOK like you have MS." and the many stares as I try to walk when spasticity has set in. I feel they are saying "Something is wrong with you!!"...yes, I do know, thank you very much, lol. I try to be more forgiving in my mind, these days. After all, it is only me who carries the burden of any negative thoughts that arise in my head. As some of your other readers have mentioned, people are generally coming from a place of good intention, and don't mean to hurt me, or ' touch on a raw nerve'. (Sorry, predictable, yet couldn't resist...lol) Keep writing, Ben....we love and need your columns!
Benjamin Hofmeister
Hi Ginny! You certainly don't have to resist on my account LOL.
Julia
Hey,
I'm somewhat ashamed to admit it, but i assume a lot myself, when i was younger. Not that i treated people completely different because of this, i just thought "whatever.. live & let live". But my opinion about someone was made and could hardly change. I just dismissed them.
Maybe it was part of being young and single-minded. But i noticed, to my horror, that whenever i spoke to a couple or duo with one of them in a wheelchair, i tended towards the walking, therefore "sane" one. Absolutely deplorable assumption. I didn't even notice that i did that. Until after a serious relapse, (i call them the Big Ones), i myself needed a wheelchair to get around. Just for a month or so. I noticed that not only i was unrecognisable to acquaintances and even friends, people focussed on my "caregiver"! I was so pissed, vowed i would never do that. I work in an arthouse/ theatre and meet and talk to people with a variaty of diasabilty flavours. And it's sad realy, that sometimes the person in a wheelchair seems surprised to be spoken to. In quite some cases the walking part has the tickets, askes where to go, even speaks fòr the other one!
Last anecdote for now. Every year i get summond to see my diasabilty benefit liaison. I was given a new one, i stopped counting at 4. In short, this lady a: questioned why i was 5 minutes late, couldn't be because of my busy agenda. b: why i dìd work for a few hours a day, but not èveryday. And c: had the absolute disgraceful guts to say;" well, miss Julia, I must tell you that i don't beleve you actually hàve ms. My neighbours doughter has ms. And she doesn't look anything like you".
And this lovely dragon decides wether i get my allowance or not. I just sat there silently for 10seconds. Then i said;" in about 3 seconds i'm standing up and walk out if here. If i don't, i will shout and swear at you òr will burst into tears. And since i will not grant you that satisfaction of both, i rather walk away." I filed a complaint and never saw her again.
Benjamin Hofmeister
So much good stuff there Julia! The part at the end where the disability liaison said that she didn't believe you had MS because she knew someone else with it who didn't look like you really got under my skin because I think that is one of the most common toxic reactions we get as people with multiple sclerosis. I'm sorry I didn't know what it was supposed to look like is one of the first things that comes to my mind as a reply. I also fall back on my common phrase, if you know one person with MS then you know one person with MS.
Tasha
LOL - I do not know what presumptions are made of disabled people and/or individuals specifically with MS but I will say this is me. I also have a disability which happens to be MS. All I can say is to others, forge ahead and keep moving. Presumptions will be made regardless.
Benjamin Hofmeister
Thank you for the comment Tasha! You are so right. No matter what presumptions someone might have, they are based on someone who isn't me.
Deb Crall
My Name is Deb and I have PPMS IN 2020. I am mobile but I use a walking stick when I know I will be walk on even surfaces like airports. Plus if it will be a long day as I do get tired easy. My Balance is my issue mostly.
I was on a flight recently and had my walking stick. the flight attendant stopped me and asked, "JUST WHAT DO YOU THINK YOU ARE GOING TO DO WITH THAT?" I am ususally quick to respond but I was getting into my seat and it was busy around me and I was embaressed. She took the walking stick from me with out saying a word and tossed it in the over head compartment . I felt like everyone heard it and I went to my seat, at the end of the flight one of the customers went up and got it down for me. I was thinking at 4' 9" HOW WOUlD I GET IT AFTER THE FLIGHT! THE ATTENDANT NEVER OFFERED.
Benjamin Hofmeister
Hi Deb and thanks for the comment! I flew twice on commercial planes when I was still using a cane and both times, they made me do something different with it. One time it went in the overhead compartment and one time they had me put it under my seat. In both cases, it was a little difficult for someone with limited Mobility to reach. I remember thinking at the time that I couldn't possibly be the first person that they had ever seen who used a cane.
Now that I'm in a large motorized wheelchair, I'm a little afraid of trying to get on a plane. There's been too many stories of broken wheelchairs Etc.
Patrick Moeschen
Ben this writing is spot on. I often get into conversations with strangers who share that they know other wheelchair users. It’s like we all own Jeeps or something that ties us together. I usually find it humorous and then I try to educate people on what muscular dystrophy is…….i can’t tell you how many times I have heard “oh, my aunt had MS.” I’m not sure why they think MS and MD are the same…..but I won’t assume!!!
Benjamin Hofmeister
Early on an old aquaintance overheard me talking about MS with one of the military doctors. At first he asked me how long they were giving me and when I explained that it wasn't fatal, he asked if it was the same thing as Michael J Fox has. I had to roll my eyes and explain that that was Parkinson's which is not really even a cousin of multiple sclerosis. He assured me that he knew what I was talking about then and asked if I had considered bee sting therapy. At that point I had to look at him and point out that 5 minutes ago he didn't even know what I had, but now he felt comfortable enough to recommend bee venom has a treatment option.