Fear of Mobility Aids

By Devin Garlit

3 min read

Recently, while discussing my article about the fear of falling, it came to my attention that there is another source of consternation on the flip side of that subject. While the fear of falling can be very intense for some, concerns about using a mobility aid can cause an equal amount of fear and anxiety. For a number of reasons, taking the step of using a mobility aid can be extremely difficult for many who live with multiple sclerosis.

MS mobility aids and appearances

Let’s face it, having to use a mobility aid like a wheelchair, cane, walker, or even a brace, can be a blow to one’s sense of vanity. No matter how accepting we may be of others that use these forms of assistance, when we have to do it ourselves, it can create a sense of dread. Most people are concerned with their appearance and they fear what using a mobility aid will do to it. We may recall how we’ve probably thought about others when seeing them with those aids and realize that now, people will see us that way. Will they think less of me? Will they think I’m unattractive? Will they do that thing where they tilt their head in pity when they see me? Those are scary thoughts to most of us.

Have I progressed?

For many, appearances aren’t the main concern, it’s the admission that using a mobility aid signifies that is so troubling. If I need a device to get around, does that mean my disease is getting worse? Am I fighting a losing battle? If I need a cane now, how long before I’m in a wheelchair? Or am bedridden? Or dead? Starting to use your first mobility aid can feel like the beginning of the end for many people (it’s definitely not, but it sure feels that way at first). For some, it will really bring home the seriousness of their disease and force them to deal with it. It’s one thing to have the occasional exacerbation and recover, it’s easy to be dismissive of MS when that happens. Those exacerbations add up though and can lead to needing a full-time mobility aid. Having to use an aid is certainly a wake-up call that MS is a big deal.

I don’t really need an aid

MS has a knack for making people toughen up throughout their journey with the disease. That can lead to a lot of attitudes that make us think we know better than the doctor. We often feel we are strong enough to get by without a mobility aid. I am very much guilty of this and it’s a reason why I fall as much as I do. I’ve not only become stubborn, I’ve begun to feel kind of invincible at times, like I can handle anything with no extra help. After all, I’m so used to catching myself at the last moment or leaning on a wall for support when needed, that it’s easy to think I don’t need any extra help. I’m wrong, of course.

In reality, it’s liberating

All of the reasons I’ve suggested already make falling seem like not so bad a choice, but that couldn’t be further from the truth. Falling is dangerous and we need to take advantage of everything at our disposal to prevent it. In addition to that, embracing the use of a mobility aid can actually be quite liberating. If you can get past the mental hurdles I’ve already brought up, you’ll find that using an aid opens up more of the world to us. We can go to more places because we can travel further and longer. In addition to that, using a mobility aid helps you to not feel so fatigued so quickly or harshly.

Regaining some of our independence

That last point, about fatigue, is really a selling point to me, and I’m sure to others as well. If we use a device to take some of the effort off of us, we get worn down less quickly. That “MS tax” the following day isn’t as high either. Using a mobility aid also makes us more independent and allows us to rely less on others.

Mobility aids give us more than they take away

So, I know it’s hard, from a mental standpoint, to use a mobility aid, however, if you are prescribed one, try hard to get past the self-imposed stigma for your own benefit. Working with a physical/occupational therapist to properly fit and show you how to use your aid can be a crucial step in adopting one, so be sure to check that out. After that, try to focus on what it is giving you, not what it is taking away!

Thanks so much for reading and always feel free to share!

Devin

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cheyennejourney Member
I've "convinced" myself that a walker inside the house is "more dangerous" (ie that I may fall because now I've got to keep track of where my body is and where the walker is). It's total BS and I know it. But at this point I just want to continue to believe my own lies. It's stupid I know, especially since on a daily basis I fall against/into walls and counters. I recognize that I'll have to stop being "dumb" about it at some point (very soon), but not today 🤷‍♀️
1. dgerbing Member
 <inline-mention username="Devin Garlit" user-id="3978256"/> I use a cane. If I need something else I would prefer to sleep forever. My life right now kind of sucks just with a cane I don't get enough of my medications and I just can't do much but if I was in a wheelchair I think it would be just like over
2. cheyennejourney Member
 <inline-mention username="dgerbing" user-id="3980730"/> I can totally understand your feelings. I have found (for myself), that the line of what I can tolerate, gets continually moved. I am in no way dismissing your very valid feelings, just offering my experience, that what I've said previously, that I would not accept, has moved, as each new challenge comes along.
colette4 Member
I just got a rollator and am scared of it I am having so much trouble getting better from my last relapse. I am used to pushing my walker around for awhile then gradually getting used to the cane. It isn't working this time. I'm having a lot of trouble. I just can't get my balance right. I am not progressing as fast I want to. My therapist thought that my getting a rollator would be of more help than my walker. I just have these visions in my head that getting a rollator means that I am getting worse and that the next step would be a wheelchair. I have two weeks left of my PT and have to make it good. I am having bad reviews on my progress, how can I turn it around - I need to get my body and brain on the same path - I have to show that in eight weeks I have made lots of progress 
1. Devin Garlit Moderator
 Hi <inline-mention username="colette4" user-id="3959460"/>, that's tough, I get it though. It feels like it's a sign that things are advancing. You might even be subconsciously impeding your progress with it because of that. It may even be that you need not only a physical therapist, but a mental health one as well. I've spoken with one about my cane for similar reasons. It's important to try to remember that the rollator is a path to more freedom, not less. I also think it's important to remember that a rollator doesn't mean a wheelchair is next, sometimes people progress the other direction and go back to a walker or a cane. Nothing is ever set in stone. Another thing to remember, that even their critique and notes on your progress may not seem pleasant, it's still their attempt to help you. Not everyone has a great way with words, but I doubt they have anything but good intentions in mind. Fear of falling is tough (<a href='https://multiplesclerosis.net/living-with-ms/fear-falling' target='_blank'>https://multiplesclerosis.net/living-with-ms/fear-falling</a>), but if you fall, you'll get back up. While it's scary at first, remember that ultimately, the rollator is there to help prevent you from falling. Good luck! Try to remember the benefits and that a rollator can be a very positive thing, not a negative.
2. marisb Member
 I've had rollators for many years. With their help I've been able to travel around the world and not miss out on the things I've wanted most. Give it a chance. It's really worth it 😁🌼
colette4 Member
@Lori306289 - you might be right that I might be getting in my own way. I have a fear of falling and appear apprehensive when starting my exercises. The things that were written in their notes (and sent to my doctor) hurt my feelings or maybe just hurt. I'm feeling very worried about going back in the morning. 
1. Lori Foster Member
 Hi @colette4. Feel free to be forward and honest about what they wrote in their notes to the doctor. It might open up an honest conversation about how they can help you and you can help yourself. If not -- if you find they are simply unkind people -- maybe you can find a more compassionate place for your therapy. Sending lots of gentle hugs! - Lori (Team Member)
Tony71 Member
I'm right on the cusp of needing a cane. I was diagnosed 31 years ago (49 now) and am very grateful to still be walking. But it's getting tougher and tougher. On bad days when I know I'm going to need some assistance, I take a hiking pole to make me look normal-ish...sort of. I'm being self-conscious I suppose. Another good article, Devin. Thank you.
birdworker1 Member
Devin- Another fine article. I fell for five years before getting my first AFO'S. The improvement in my life was so significant subsequent devices came easily. They allowed me to continue working in the yard and hiking for a number of years. Other aids, canes and walkers made it possible for me to move safely around my office building. I was not completely at ease with aids as I had to fall in front of a client before I would use my cane full-time. And then there was my first medical scooter, a large four wheel medical scooter with pneumatic tires. This scooter allowed me to continue birding in the field. I completed a Master Naturalist class with it. And I pushed its limits. As the neuromuscular disorder worsened, I had to accept I was putting myself in danger by pushing myself in the field. I was diagnosed with MS four years ago. It has shrunk my world. I now use a power wheelchair that is most at home on solid services. And yet I still get outside. MS has limited my range of outdoor activities due to vision problems and my wheelchair. I am still out there.
SharonW27 Member
Congrats on getting past that mental hurdle! How/when did you see that an aid can provide liberation?
littlet Member
A wonderful article, Devin, in which you hit all the points! Even though I've been using my cane for several years SO I CAN RETAIN SOME INDEPENDENCE, there are still times when I don't or don't want to. This is the best reminder of why I'll keep up with it.
mermaidylady11 Member
Thanks Dev for eloquently articulating the (another one) the mental and physical hurdles we have to negotiate regarding mobility aids. Good job. What infuriates me is when a person without MS, (but nevertheless an apparent expert), glibly says #useitorlooseit - inferring that we didn’t try hard enough mentally or physically. Grrr omg we hardly drink or party, we monitor our food, fluids , medicine, supplements, suppleness and sleep and push ourselves every day physically and mentally I learnt the hard way (A few broken ribs are broken hands later etc) that you don’t get any points or indeed reward for pushing yourself too hard - life’s too short to bravely struggle on, when that precious energy can be preserved for good/mundane things ‘ use it or lose it’is for healthy people; not people fighting with their incurable, degenerative neuropsychological illnesses ffs .. I’ve gone from 6 miles to 6000 steps, to 6. I had a younger man at this point; so believe me I used it...and one uti and a fall later...yep I lost it.. Getting a walking stick was frankly very helpful and I used it as a dapper fashion accessory with knee high boots and red Lippy. I was slightly less impressed with the distinctly less fashionable rollator- there was no hidin it then, but needs must - the chair on it was a godsend - but watching people staring at me struggling began to grate. But there was no way I was getting a wheelchair,so I got a travel scooter to whizz about on.( I have used a wheelchair but well honestly they are wide,cumbersome and difficult if you want to actually do something- like carry a butty and a cuppa to the table ... ) Well let me tell you that little noddy scooter opened up my world again. kids love it. People react well to it (incredulous amusement not pity zz) and it is small enough to fold into a car. It’s also small enough to turn on a penny so I use it indoors too and it is so much easier than in a wheelchair. So we have to be brave, inventive, adaptable and not deterred by comments that if you don’t use it you lose it, which triggers a huge amount of guilt, stress , anxiety, a danger and misplaced tenacity to struggle on, when-the alternatives aren’t an admission of failure or defeat,but a very sensible enjoyable liberation?
joannmaxwell Member
Devon, I love your articles! You are just so real! I had
joannmaxwell Member
a really bad fall a couple of years ago. I needed emergency surgery. My first hip replacement, not because of MS, needed to be replaced. I also needed a 5 inch plate attached to my femur with wires. When I started using a walker after the surgery, I was flabbergasted at how much less energy it took. When I saw my orthopedic surgeon at my one year visit he was very glad I was using a walker. I told him for me it was all about fatigue. I still can’t go very far or very fast with the walker. So I have recently received a four wheel scooter that enables me to do activities with family and friends. My quality of life has increased because of it.
joannmaxwell Member
I also wanted to mention a couple of other items. My physical therapist recommended I get the Dolomite walker. It enables me to stand up straight and have a more normal gait. I read an article a while back that recommended putting a 3/8 inch heel lift on the opposite side of your foot drop. I have used an AFO for several years, but the heel lift gives you better ground clearance. I have found it to work very well!
1. Lori Foster Member
 <inline-mention username="joannmaxwell" user-id="4012891"/> I am so glad you have found devices that give you more freedom. I wish more people would understand that assistive devices can equal freedom. Thanks for more for sharing! - Lori (Team Member)
jenniem Member
Devin, as always, you've nailed it! Serendipitously timely for me too. 🙂 I had a recent appt with a physical med & rehab specialist, and am now booked to see an orthotist in 3 days. Not sure what it'll yield. Feeling torn between angsty moments where my addled brain's hosting a raucous party with mismatched guests: 
1. jenniem Member
 <inline-mention username="jenniem" user-id="4009132"/> pontificate about "enabling ability vs focusing on disability." Ack. My brain's a noisy place. All with a case of chronic analysis paralysis. We'll see where this dizzy bint's at by Monday 🙃
2. Devin Garlit Moderator
 Thank you <inline-mention username="jenniem" user-id="4009132"/>! And no worries, my brain is a very noisy place too!
lightweaver Member
I want an UpWalker! I have always said the height of a Rollater is making my back become hunched. That is one of many fears. another is shrinking looking at the floor. 
1. Devin Garlit Moderator
 Thanks <inline-mention username="lightweaver" user-id="4078970"/>! Those are very cool and definitely help with your concerns! Hopefully they become more commonplace very soon!
pippa Member
OK I get it . I really need a scooter but, what happens if topographically it's not possible? Haven't found a solution yet.
1. Devin Garlit Moderator
 That's a great question <inline-mention username="pippa" user-id="4065403"/>, I would imagine that is something that would be good to talk to a physical or occupational therapist about though, I bet if they had a good understanding of the terrain, they would be able to offer some tips.
2. Lori Foster Member
 Scooters are definitely not convenient in all situations, @pippa. Do you often find that topography is a problem where you live or are you concern that those challenges might come up? Best wishes! - Lori (Team Member)
pippa Member
Lori, the answer is yes. I am mostly confined to home because of the topography, relying on someone(maybe) to dust me off, take me out to air. 
1. Lori Foster Member
 I wish that were not the case, @pippa. I could see topography being a problem in a rural area or on a crowded city block though. Many people can't use their scooters where they live, but they use them for a little more freedom when they are out and about, like at the store or the doctor's office or even someplace like the zoo. A scooter can give you the freedom to go places you might be difficult to navigate otherwise. To use a scooter elsewhere though, you would need to have a lift attached to the back of a vehicle. I hope you are able to make use of one and get out more often. Gentle hugs! - Lori (Team Member)
2. Devin Garlit Moderator
 Thank you for sharing <inline-mention username="pippa" user-id="4065403"/>, I have definitely gone through some stretches where that's been the case for me, particularly in the warmer months. Hang in there!
jerkyjerk Member
As MS progressed so did my mobility ability advance too. Granted, I eschewed the cane and crutches as unwieldy and a magnet for unwanted attention like ants discovering the cookie jar, it was uncomfortable and annoying. Years later enter Wheelchair World. My first ultralight garnered a curious crowd looking at my cool chair; I delighted in showing them its unique features. It was a very easy chair to maneuver eventually proving to be a shoulder joint killer (rotator cuff injury). That cure was an electric powerchair precisely fitted to me by a physical therapist, a highly recommended practice to ensure proper fitment. Bodily articulation then took a hit and a new powerchair with electric assist devices became the norm. Make no mistake this chair has disability written all over it welcoming it into my life as my Cadillac of mobility. Before I forgot the conversion van. This stuff never ends. 
1. Lori Foster Member
 Hi <inline-mention username="jerkyjerk" user-id="3990971"/>. Though I am sure your progression was no fun, your writing talents found me enjoying reading about it. Best of all wishes! - Lori (Team Member)
namrod Member
I have had mild MS for nearly 30 years. For at least 15 most people were surprised to hear I had the disease… However I also have chronic migraines and celiacs disease.. And about 15 years ago I found the drugs I took for the migraines had given me osteoporosis. Then it was very difficult to correct it with my Celiacs until the infusion drugs came out. So for about 12 years, when I tripped and fell, I broke about 17-20 bones. I broke bones in my hands, arms, shoulder, legs, ribs,.. without using any walking aids! Until about 15 years ago I fell in NYC on the sidewalk and broke my kneecap. Painful! I was on my way to my neurologist’s office that day, too! And since then, I took his advice. I use a cane whenever I go out of the house… unless I have a handsome arm to hold. But in addition, I got myself a gorgeous cane, so I’m still cool! 
1. Lori Foster Member
 How can you go wrong with a handsome arm or a gorgeous cane to choose from, <inline-mention username="namrod" user-id="4057977"/>? 😀 I am glad you made the decision to use a cane and I hope you never break a bone again. Best wishes! - Lori (Team Member)

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