Ending Up in a Wheelchair

“Not all patients with MS end up in a wheelchair.” I first heard this phrase the day I was diagnosed. “I don’t want to end up in a wheelchair,” is something I soon started telling myself with alarming regularity. The terror of this thought was what got me to the gym, got me giving myself painful injections, got me scared into action. You’ve heard the refrain, you may have said it yourself. It’s no coincidence we all express our fear of decline using identical language: end up in a wheelchair. It’s an unhelpful, toxic mantra that reinforces what society wants us to believe about disability, that it’s a fate worse than death.
 
The troubling reality of MS is that a wheelchair is not the worst possible outcome. Sadly, advancing disease doesn’t always stop with the loss of mobility. That’s the bad news. The good news is, a wheelchair is not, in fact, the end. Many people live fulfilling lives with the assistance of a chair and other devices. Of course, the best news is that with today’s treatments, many will never require the use of mobility aids, but that’s a headline that already gets a lot of attention. For those who will need one, who happen to ‘end up’ here, the feeling can be one of failure, of being beyond hope, of being cheated of the promise that this wouldn’t happen. MS is full of hard truths. But continuing to push this softer narrative has consequences beyond hurt feelings.
 
Stigma and Acceptance

There’s a stigma associated with wheelchair use that we’ve collectively created. We just don’t hear panicked cries of “I don’t want to lose lower limb function,” because there’s more to our fear than loss of mobility. There’s a judgment and social isolation that can come with wheelchair use that makes it difficult for people to accept them. Many would rather risk falls and injury or choose not to participate at all than be seen using a chair.
 
By repeating the idea of ending up in a wheelchair, we’re unwittingly contributing to the very stigma we wish to avoid. We make the wheelchair the enemy, something to look at with disgust, instead of recognizing it as a tool, a solution to a problem. An idea that’s reinforced by well-meaning friends and family whose response to these concerns is a dismissive, “There, there. Most people with MS don’t end up in wheelchairs”, or, “Don’t worry. That’s not going to happen to you,” when we could be saying, “This isn’t likely to happen. We hope it won’t. Here’s what we can do if it does.”
 
Reality Check

Like most, I’m active on social media. I participate in several MS forums. Many times I’ve found myself reading some version of the unfortunate phrase, “I just hope I never end up in a wheelchair.” Sometimes from high-functioning, even athletic people. Of course we’re all entitled to express our worries. A diagnosis of MS carries with it a scary and uncertain future. But when we imagine worst case scenarios well in advance of them actually happening, we’re not living in the present. What’s more, doing so in public spaces can be hurtful. When I see a social media status like this, I’m aware that someone reading it might already be living it.
 
In some ways, I’m already living it and the idea that my life has been declared unlivable is maddening. Each person affected by MS has a unique course. We would all do well to deal with challenges as they come, without putting ourselves in a future that may or may not exist, or a future that belongs to someone else.
 
Research

Historically, MS clinical trials have focused heavily on the early ‘relapsing remitting’ stage. With the success of several therapies for this subset, attention is now shifting towards more advancing disease, that which we’ve labelled ‘progressive.’ Despite this, wheelchair use disqualifies patients from participation in many, if not most, major clinical trials of new therapies. MS may advance well past wheelchair use, but research that excludes this demographic has determined that the use of a wheelchair is indeed the end.
 
Nobody wants to be affected by MS to this degree. It goes without saying. I’m not suggesting we shouldn’t express our fears. But we shouldn’t feed them either. So yes, as an occasional wheelchair user I’m afraid of losing independence, of having to navigate a world that’s still largely inaccessible. I’m afraid of the judgment and stigma and of society’s neglect and ignorance of disability. I’m afraid of all the ways in which my life may be impacted by aggressive MS. But I will not be afraid of a wheelchair any more than I’m afraid of my physiotherapist. They’re both there to help me. I will not participate in the idea that the use of a wheelchair is somehow the end.
Tags Activism & Advocacy, Healthy Living      18 Appreciate this
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Ardra

Ardra Shephard

Ardra Shephard lives in Toronto. She writes about life with MS on her popular blog Tripping On Air

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    36 Comments

  • Avatar
    knurkie  Jan 26, 2017 1:31 PM
    The title of this blog caught my eye....would I end up in a wheelchair? Well, yeah..it could happen. So.thanks for being honest about this fear and for putting it in a bright perspective. I think that is what we all try to be best at but you identified exactly what we face- the unknown.
  • David Maskalick   Jan 26, 2017 2:04 PM
    Ardra Shephard, I agree with you completely.
    In fact today I'm wearing my T-shirt showing MS symptoms may be deceiving.

    I MAY...
    STAGGER BUT NOT DRUNK
    SLUR WORDS BUT NOT STONED
    FEEL FATIGUE, BUT NOT LAZY
    NOT FEEL MY BEST TODAY BUT
    I AM STILL STRONG
  • Christine Kennedy   Jan 26, 2017 2:49 PM
    Good thoughts. I never thought I would be grateful for a walker or a wheelchair but I am now, makes life easier and I do take it one day at a time.
  • Lisa   Jan 26, 2017 10:23 PM
    Your amazing Ardra and so far from the end. Only closer to the beginning! Beginning of really *****en amazing things to come! Xx
  • timothymuck82  Jan 27, 2017 4:44 AM
    Thanks for your perseverence. I expect that you have more patience than I do. My mind jumps around. MTV had a program called "Pimp My Ride" What if your ride was a wheelchair? I stopped watching the show when it seemed that I was the only one with this idea.
  • tfs   Jan 27, 2017 8:03 AM
    Ardra: what a great piece. Like you I am still able to walk (and drive unassisted), but mine is a progressive disease. Yup. I might end using a wheelchair, and I think fear has been fairly successful in helping promote that mindset. Today is a benchmark of sorts for me, and I will try to embrace the possibility and bring to awareness that "Everything really is okay - just as it is." Thanks, again. Snowing just north of Toronto. (And that's okay. ha ha)
  • suzie hieter   Jan 27, 2017 8:41 AM
    I was dx'd in 1970 ... my son was less than six months old. In 1985 I began using a wheelchair; my second wheelchair lives behind my driver's seat in my car. MS has brought more into my life than it has taken away.

    In 1992 I began taking classes in a local community college, transferred to a university, and then drove three hours to attend grad school, culminating w/a masters degree in social work.

    I began going to Mexico during that time to take immersion classes in Spanish in '93, I have returned to visit friends almost every year.

    There is definitely life after a wheelchair!
  • Armin Cooper   Jan 27, 2017 3:12 PM
    I discovered that I had MS two and a half years ago. I've been doing everything I can to exercise and eat healthy. So far I can still move around easily although there are times when it has been difficult. I agree that there is a stigma associated with moving in a wheelchair. MS is a pecular disease as it often cannot be openly seen by other people. We just feel it and know that it is there. My mother-in-law has Lupus, another autoimmune disease that is similar and she hates how people have a difficulty understanding her disease. Since our experiences are similar, she and I talk all the time and I try to do what I can to keep her upbeat and happy. That last word is probably the most important: happy. I think the best way to deal with these types of diseases is to find ways to remain very happy. It might seem like a difficult thing to do but I feel that it is essential. We are all unique, one of a kind for all time and so for that reason I am certain that we can all find a way to be happy. This is how we can stave off the effects of this disease and avoid having to use a wheelchair. You might be surprised how powerful our minds can be. Never give up.
  • Avatar
    SmartyPants  Jan 29, 2017 12:12 AM
    This article is spot on, it says everything I have thought about over the years. When I first told someone close to me that i had MS, he said that he would rather die than end up in a wheelchair. How wrong he is. I worked 35 years in service to people with disabilities only to become disabled myself. Rather ironic ya think? Well over those years I learned how to access medical equipment, get the best PT,OT and medications that I could for my clients. So who else would be good at being disabled? Me! It doesn't matter than I use a wheelchair some of the time, mostly to give my body support and sit on an air cushion to help me with my back pain. A wheelchair takes me to swimming, to see friends, to go for walks with my mate. A wheelchair is a God send. And today with all the new technology out there, a person can custom their home to meet the needs of the person. Avoiding going into assisted living or a nursing home is my plan. Setting up getting Oregon Project Independence helps me with a weekly cleaner, and if I ever need more care it will be there for me. But this year the Oregon Legislature is thinking of defunding it, so if any of you out there are getting help with OPI write your representitives and look up the health and human services committee and write all of them. It's a home support for people who aren't on medicaid. So having a wheelchair is a wonderful thing, it's all in how you look at it.
    Thanks for your well thought out article, I will reblog it on my twelves blogs.
  • robertjon  Jan 29, 2017 7:50 PM
    Being 4 yr into alcohol + drug recovery, I thank God everyday for my life. I will deal as positive as possible with everything MS sends my way with a smile, never going back to how I use to live. Blessings, Jon
  • Nancy   Jan 30, 2017 2:45 PM
    Mobility is one of my bigger issues with MS. If the choice for me were between better thinking and better walking, I would take the thinking and a chair any day.
  • george mcdade   Jan 30, 2017 4:53 PM
    hi Arda iv had ms now for 26yrs and now my mobility is very limited now
    ive gt 2 sticks and if im being honest i need a wheel chair,but ive fought this disease
    for as long as i can remember and i feel if i get a wheel chair then its beat me,the thought of it makes me feel really down
  • Judy   Jan 30, 2017 6:16 PM
    Thank you, thank you for this encouraging read. I agree with you "not to participate in the idea that the use of a wheelchair is somehow the end". I use my wheelchair as a tool also, to help me conserve energy, to go places I would be unable to walk to or through, etc. FEAR is my new acronym, FACE EVERYTHING AND RISE!
  • Elizabeth Moore   Jan 30, 2017 6:41 PM
    Great article. I have had MS for 30 some years and was always fairly active believing I would never use a chair or any assistive devices. But after falling on average twice a month cracking a shoulder, rib, twisting my leg and arm etc. I got a walker a year ago (bright red!) and rely on it. Last summer I travelled in Europe and rented a great chair. It was wonderful for long distances. I have a Ti Lite chair ordered now. And in two days i head to Hawaii with my walker and chair. I can get around! Plus it makes it easier for friends and family. They are not worried about my falling or having to slow their walking.
  • Kimberly   Jan 30, 2017 7:55 PM
    Thank you for bringing these words and this idea to all of us. I have to admit I have often made comments about not wanting to end up in a wheelchair myself. ❤
  • Barbara A Brown   Jan 30, 2017 8:20 PM
    I too heard these same comments the day I was diagnosed. They came from my mom.in her defense, a lot of people think the same thing. Eleven years later, I'm still walking, although not as steady as before. But I am still walking, without assistance.
  • Avatar
    TonyM.  Jan 30, 2017 8:57 PM
    Thank you for your write up. I just wanted to add one thing. I believe MS, at least for me, is equally a mental disorder as it can be physical. For some reason, many, including doctors, only focus on the physical abilities of a person diagnosed with MS.

    I was diagnosed over 7 years ago. For the years since that scary day i lost my vision and thought i was going to die, my primary struggles included severe fatigue, my memory and ability to focus steadily went downhill, so did my career that was about to explode. Almost every job these days requires those skills, especially mine. I have been a clinical engineer for about 20 years. Memory, thinking fast and making quick accurate decisions are vital in succeeding. Being able to hold confidence in a stressful environment, Vital.... Stress, oh my, i never had it till about 6 months prior to my first attack to present. Any bit of stress would trigger an avalanche of side effects, some which i mentioned above.

    We can adjust our lives to a wheelchair but i don't think my damaged brain will ever adjust to the happy life i once lived. I don't think i would be that upset if i ended up in a wheel chair if my other side effects would disappear.

    Over the last year i figured out what really helps me, and it isn't no drug or therapist, nor something instructed to me from an MS specialist. I'll post those thoughts on another post hoping i can help someone else going with a similar progression as mine.

    Stay happy,

    Tony
  • Elisa Espinosa   Jan 30, 2017 9:11 PM
    I am afraid of ignorance about MS
    I am afraid of the pain I live daily
    I am afraid that people simply don't get it
    I am afraid of the unknown
    I am afraid that I will be too afraid
    Today I used a cane for the first time
    I don't know if I 'll need it tomorrow and I am afraid I will
    I don't want to be afraid of the wheelchair
  • George Rector   Jan 31, 2017 2:34 AM
    "Not all patients with MS end up in a wheelchair." Your analysis is quite correct. I have MS and paraplegia. I've used a wheelchair for over 23 years. "...end up in a wheelchair" is the most demeaning thing I have encountered, and that is the way those newly diagnosed are welcomed. I have not "ended up" anywhere except north of the Artic Circle, south to beautiful Aruba, east to Amsterdam and Paris, and west to Hong Kong.
    The difference is my wheelchair. It is made of titanium. It is custom fit to me. It is a prosthetic lower body, and it is nothing like the standard wheelchairs that are so common. I don't feel the chair because it is a part of me.
    Instead of telling people they likely won't "end up," let's tell them the truth. There is equipment available to keep you going, and you won't "end up" an invalid.
    Thank you for helping to set the record straight.
  • Anastassis   Jan 31, 2017 2:37 AM
    well said brother/sister-in-arms.
  • Charles Carlton   Jan 31, 2017 5:28 PM
    I Did, I Did end up in a wheelchair 12 years ago. I also completed my degree in Civil Engineering and now work in construction. I also moved to the inner city (Portland OR), gave up my Driver License, ride mass transit, and live alone. I'm doing my best to blow this stigma up! Ableism is something we all must work to give up, even us disabled persons. BTW, I ride a rigid titanium chair.
  • Stephen Pate   Feb 1, 2017 7:34 AM
    I can understand the writer's response to needing a wheelchair. I cried when I discovered I would be using one 17 years ago. However, I quickly learned that the wheelchair liberated me from not being mobile. All of a sudden I could go shopping, take long walks etc. activities I could not do walking. I love my wheelchairs - yes I have several for different situations. They are like the car and bicycle - wheels that extend my capabilities.

    I don't think the stigma is as great as the writer suggests. I have lots of friends, dated and got married again, played in a rock band and did club gigs as a solo singer songwriter using a wheelchair.

    If we live long enough, most people will develop multiple disabilities. For a vision impairment, glasses are assistive devices that make life better. For hearing, there is nothing like hearing aids to give us the gift of conversation and music. Wheelchairs are a terrific solution to becoming semi or non-ambulatory.

    Look on the sunny side of life.
  • Joan   Feb 1, 2017 2:19 PM
    Have had MS since 1988. Been on most of the injectibles. Done pulse steroids. Tried to be a part of clinical trials (closed before I ever got the chance). Still walking w/walker;still driving ;still enjoying life. If/when I get to the wheelchair stage, I plan on going back to wearing short skirts and high heels! Loving God and who He has made me to be right here, right now!
  • Avatar
    hopeandhealingbook  Feb 2, 2017 4:06 PM
    My MS symptoms were actually caused by Mercury toxicity. In 1999, after having two silver fillings drilled out, I immediately suffered from killer headaches, skin tingling, vision problems, foot-leg-body numbness, fatigue and other neurological and mobility problems. I was diagnosed with MS, but later realized that my problems were from Mercury toxicity from my dental amalgams (which were 50% Mercury). By 2001, after heavy metal detoxification, the last of my symptoms faded away and I have experienced great health and a normal lifestyle since. Praise God! You can find out all of the details of my recovery along with other helpful information at www.hopeandhealingbook.com. The truth is that countless people have been cured of neurological problems by ridding their bodies of heavy metals.
    – Yours in Faith & Health, Debra Kaiser.
  • Donna   Feb 6, 2017 5:58 PM
    I have MS and cerebellar degeneration, as a result, I am in a wheelchair 24/7. People have said oh I'm sorry, or that's too bad. I respond with- no it's not! I do everything I want to do, I just happen to b sitting down when I do!
  • BrookeLowry  Feb 7, 2017 3:24 PM
    I really appreciate your words here. I am 65, and I have had MS since I was 43. I started out using a wheelchair. I wasn't there for long. If I would have been, I couldn't have gotten Betaseron when it first was released. I couldn't have gotten Copazine later either. I am fortunate. But if I need to, I will enable myself with my chair so that I can be more active, inspire of fatigue.
  • Sonia   Feb 12, 2017 1:56 PM
    I'd like to know if anyone has tried medical marijuana for MS and if so, did it help?
  • Avatar
    ISLP2  Feb 19, 2017 2:33 PM
    Over eleven years after being diagnosed with PPMS, I am awaiting delivery of a Class III power wheelchair. I waited longer than I should've to start the process, largely because I bought into the idea that a wheelchair is "giving up." The fact that my power wheelchair will eliminate my almost constant risk of falling and allow me too move around the house without becoming exhausted was overlooked because of a silly stigma I carried in my head!
    A comment on one of the MS message boards crystallizes how I now feel about a power wheelchair. "I was handicapped," he wrote, "until the day I received my power wheelchair!"
    Thank you for your blog post.
  • Rebecca Seeger   Feb 28, 2017 10:32 AM
    15 years ago I was told that I needed to be on a DMD for the rest of my life. Now at age 65 that drug is no longer working for me. My question was, "Is this it? Now do I go into a wheelchair? But I'm not old yet!" Friends suggested I try a clinical trial . My age seemed to be against me to try that avenue. Thus the wheelchair thought popped up again. I decided to try a new drug and it is helping. Now I'm thinking of investing in an expensive bike that is handicap fitted for me. I will ride until ... the wheelchair!
  • Kit Minden   Feb 28, 2017 10:36 AM
    For some of us, the wheelchair does represent very extreme limits. We no longer drive. We can't get to most gatherings. People don't ask us. We can't just get a lift with a friend. Life is very limited due to the things that keep me in this wheelchair.
  • Avatar
    MS-SUCKS  Feb 28, 2017 10:38 AM
    It's as if most MS related media i.e. magazines, websites, advertisements, MS events, etc. go out of their way to hide people with MS mobility issues. When do you see pharmaceutical companies advertise their meds with someone in a wheelchair, walker, or even a cane? Their ads have people hiking, biking, doing triathlons, etc. I've even attended MS events and nine out off ten times I'm the only one in a wheelchair. You can literally feel people thinking, "Oh my god, please don't let me end up like that guy!" Progressive forms of MS with mobility issues are taboo even in the very own community that supposedly supports people with MS! That is why you seldom see people with severe mobility issues attend events because of the unwelcoming vibe given by people that have the damn disease! We might as well yell "unclean" like those with leprosy did in the Bible, to warn those with no mobility issues to come near us so they don't worry about "being in a wheelchair".
  • Suzanne Sparks   Feb 28, 2017 11:54 PM
    Your discussion about wheelchairs hits home. When first diagnosed, I was embarrassed about using a walker & would mumble about being 'temporarily disabled' to waiters. I've needed a wheelchair for 5 years now & an incredibly thankful to the nice people who hurry ahead to open doors or make room for me. I don't like being in a wheelchair, but am thankful I don't have to miss out on everything.
  • Ceci   Mar 1, 2017 10:21 AM
    I used to say that, too. But my walking, balance and stamina have deteriorated far enough that I fantasize about getting a power chair. Oh, to be able to go to the mall, or the hardware store, or DisneyWorld, and not be a drag on the people who can accomplish things faster than I can!
  • Matthew Johnson   Mar 1, 2017 1:25 PM
    Thank you Ardra,
    I have had ms for many years....I am worried about needing wheelchair sooner that I want. I srill walk my puppy as much as I can. There are people in my MS group that use chairs. I am scared.
    thanks for writing this article. Help me deal with my disease.
    thank you, -Matt
  • Bonnie Borucki   Mar 3, 2017 11:51 AM
    I just read your blog, for the first time. I was diagnosed with MS in 1990. I'm only 52 years old. About four years, I started using a wheelchair when I go to sporting events, mall, restaurants, etc so I can get from point A to point B, in a timely manner. I have so many emotions ☹️
  • missrae70  Mar 12, 2017 7:45 PM
    I have had this horrible evil disease since 1990 I am 49 years old so fuy



    1990 that's a long time anyway it's really gotten bad I've tried 15 different medications none of them have worked it's just I hate it I hate every bit of it and it's gotten to the point to where my legs don't hold me up anymore I fall on the stores even a fall in my own house I fall with my Walker I fall with my cane I hate it my my head hurts 24/7 I got this pain it's it's just constant pain because I have no L4 because that's been ate by no mylen on spinal cord now covered w/arthritis
    So the only good is taking pain pills not good but all that helps ,I'm so hate IMG it I want to be done forever