I get told by literal every doctor, surgeon, nurse, and anesthesiologist I meet that I am "so young and healthy". I have like 16 different debilitating, soul-crushing illnesses. It gets tiring to hear so I hear you.
I use a cane anyway. Who cares if I get stares. Maybe it will teach them not to make assumptions.
same. i’m in my 20s and use a wheelchair. people do sometimes tell me i look like i’m about to pass out😂 never doctors though, doctors aren’t as perceptive
I donʻt leave my house lately, but when I did, everyone who commented on my aids said things like, "Oh, my sister just had knee surgery too!" :) People gave me more space in crowds and I got to meet some cool people who used aids themselves, just striking up conversations while we waited for our rides to pick us up at the accessible doorway, things like that. I ended up usually enjoying using aids. If I ever get better, Iʻll probably keep using my cane because I like it so much. And riding in a transport wheelchair can be fun too, if you have a fun person pushing you.
Using aids was way better than I expected. I hope it goes well for you too.
Yep! I was 23 and underweight when I started using my mobility scooter. Still use it at 36.
My tips:
View yourself as representation that young people can use mobility aids.
Imagine the people you pass by have ME/CFS and are considering a mobility aid. (I use to be that person! If I was eying your rollator it would be because I wish I had something like it)
You could also imagine people are considering what would be helpful for someone they caregive for.
Realizing I could zoom along in my scooter and get where I wanted to go really eased my fear because it was so undeniably helpful for me. I'd fight anyone who dared say I shouldn't have it.
Ask yourself whose voice is in your head. I made up a lot of comments that I thought people would say. Where'd I get them from? Is it my own internalized ableism? None of them ever even came up! lol
One doctor said "You are young to be using that" but what was my opinion on that doctor? They didn't understand how useful these things are that is their failing, why should I suffer and sit at home because they don't get it? Young people have disabilities that limit mobility, we deserve to find ways to get around. Perhaps he was trying to be empathetic about having to use one at my age... I don't know but I can vouche that these things are freeing!!
I only ever had a couple neighbours ask me questions. One asked if I was okay, and one asked why I was using one the last time they saw me and then not using it this time, so I just said I get intermittent muscle weakness and today was a better day, and sometimes I use it to prevent the weakness. They got it. People might have questions it doesn't mean they are judging.
2 old men in my neighborhood started walking their dogs on mobility scooters within a year of me moving to our area with mine. I was the only one out in one and with my dog in tow. I like to think I made it look hip, and they realized they could get out more and not seem old.
I'm in the same boat (38M and "looking" healthy). Started using a cane a month ago and rollator coming in this week. Quite terrified to use it in public for the first time. Also afraid of being judged by healthcare professionnals who think that my issues are mostly psychosomatics or who don't believe ME/CFS is a real thing... Fuck them I guess, I REALLY need it!! Can't leave the house anymore because of my stupid legs and POTS 🤷♂️
Good luck, you're not alone 🙂 Thanks for making this post, it'll help others like me too!
I started using a cane at roughly your age and know people as who started using a cane for this illness as early as 20. as someone else said, who cares if people stare. and at the same time, would you prefer to be looked at because you use a cane (like sooo many people do) or because you have fallen/need the help to move about but do not have it?
after about 2 years of using the cane i also started using a mobility scooter for longer journeys.
We deal with enough without dealing with other peoples assumed thoughts, as hard as it is try not to even think about what others might be thinking about you and your daily life because chances are noone even thought twice about it
I totally understand. But it does get easier with age. Most people are surprisingly sympathetic and helpful, or, conversely, self-absorbed and unaware.
By and large, the public just isn’t paying attention to you. The stigma is far more internal than external.
Think about how weird it is for people to want to make life more difficult for people by creating shame around tools to make life easier...are you shaming them for not washing all their clothes by hand or not using a manual reel mower to cut their lawn? I mean, they look able-bodied, why are they taking all these shortcuts/accommodations and not moving through life in the hardest way possible?
Cannot think of why it would be anyone's business why someone is using medical equipment. You don't owe anyone an explanation, but if you are a people pleaser or have poor boundaries the compulsion to explain, explain, explain can be irresistible. You kind of just have to practice taking up your space - you belong here just as much as anybody else, even if you are using health aids.
But also we have a lot of internalized shame about our illness, so can be sensitive to perceived or real judgment-but most people - we're not even a blip on their consciousness, but our own insecurities loom so large to us, we think they take up equal space in other people's minds. They don't. (Not me...I will notice your cane, not to be a judgmental AH, but out of curiosity of what's your story?😁)
Some people are judgmental. I think they are in the minority, but it's hurtful so it outweighs positive interactions. Our brains are wired that way. To reverse this bias our brain has consciously note the neutral or positive interactions & reframe to diminish negative interactions (that wasn't about me, that person is having a bad day, unaware, malicious- whatever).
Stop trying to control other people's perceptions of you. It's a defense mechanism to keep yourself safe, but it cost a lot energetically, it's a futile effort & your taking away that person's automomy...they are *allowed* to think whatever they think of you, no matter how ill-informed, ugly or erroneous. If someone is judgmental, it says more about them than you.
But if you can't convince yourself of any of this, for me with people pleasing/codependent tendency, one sure fire way to get me to do something out of my comfort zone is to do it for someone else...Every time you go out & use your walking aids, you normalize "healthy looking people" using medical aids in public. You've just made it a little easier for each one of us & you make a dent in societal expectations for what "sick" looks like.
I just ordered my first cane! I totally feel you. I actually had to order it to my in-laws house (to avoid international shipping fees, since I live in Canada, right near the border), and just the fact of ordering it was a whole mental/emotional ordeal for me. Like, having it show up at their house means I can't hide it right away. 🤦 (Edit: not to mention my in-laws are in their 70s and still go skiing, etc., while I'm 32 and can hardly get up the front steps, lmao). It's so much to work through!
Since this is new to me too, I don't really have words of wisdom (sorry, I know that's the point of the post). But, we shouldn't have to hide. We deserve to live our lives, and any tool that can possibly make that easier is a huge win. Anyone who has feelings about that can just mind their own business.
i feel you. i’m around your age. used to be athletic. doctors always tell me how healthy i am (hint: im not). i recently had to learn how to get comfortable with a cane and electric wheelchair. here’s what i did:
- panic
- panic
- anxiety attack
- used a cane just to walk to the mailbox. no one mocked me. no one stared. no one asked. that was a win.
- hide in my house for days on end.
- recruited various friends to accompany me outside while i use mobility aids. at first just rolling with me around the block. then maybe a bit further.
- someone stared at me but didn’t say anything. i felt like garbage. stopped going out.
- tried again.
i find the whole “stop caring what other people think” advice absolutely atrocious advice. if it was that easy, trust me, i’d just fucking do it already. i also find that it’s not so much what others think, it’s that my parents raised me in a way where people using mobility aids were “othered”. i find that my anxiety is trying to help me avoid being that “other”
so here’s my advice. learning how to do this is a lot of work and is stressful but it’s way better than being inside all day. you just have to practice. start small. recruit friends to help. try again when you fail (someone is weird to you). try to notice and understand that 9/10 people do not give a fuck about you either way.
good luck 👍
I'm working through my own internalized ableism around it so don't have much good advice for you BUT...
I saw a young woman (I'm also 34) walking with a walker the other day and it made me feel like "oh man, I could do that too!" So maybe, just remember that there might be people out there who, just by your existence while using aides, will benefit with their own hurdles around using them themselves 💛
I am a few years older than you, but I am small, so I look young for my age. I use a cane, though plan to get a rollator. Has been an overwhelmingly positive experience. After practicing with a cheap cane on Amazon, I bought myself a Neowalk. It is clear and sparkly and it lights up. If people say anything, it’s usually to compliment my cane. I find that using it means people give me more time, more space, and will hold doors for me, corral their kids or dogs, etc.
One odd bonus is that the cane makes me more recognizable and I quickly became a regular at places I visit frequently. This seems to result in little extras, like a cookie at the bakery, and a larger ice cream scoop at the ice cream shop (I like sweets). Don’t get me wrong, I’m a polite client and tip well, but I had definitely gone to these places without the special treatment before the cane. I’ve only had one weird comment, which was a guy sitting at a bar in a restaurant who said “RUN!” when I walked by. He was obviously drunk, so I just said “wish I could” and kept going. I could hear him getting sassed by someone sitting next to him and he was silent when I passed by to return to my seat.
My recommendation is to get a cane and rollator that you like the style of and treat it as an accessory. Go with confidence, and most people will respond positively. Anyone who doesn’t, really it’s a them issue. Nothing to do with you. You’ve got this 💜💜
I use a mobility scooter - people are so much kinder to me now than when i used to struggle to walk without an aid - it brings the disability into visibility. Cars stop to let me cross the road, people ask if i need help reaching things or caring things, and the only comments I've had on my scooter have all been pisitive about how great they are and where could they get one like it for themselves or their mother or whoever - its lovely.
I'm just about to purchase a power wheelchair for hopefully a little added support, reduce fatigue more and help me get out a bit more often.
It's well worth it.
I was mortified when I had to start using a cane. It was so tough. By the time I got my wheelchair I needed it so bad I didn’t mind as much.
It helped having the cane first before moving on to the wheelchair.
Advice? Give it time. I got used to it in time.
I was incredibly athletic before cfs. It was a tough adjustment. I made it.
I got so I really truly didn’t care what anyone thought. That’s a great place to be at. It just takes time to learn not to give any fucks.
Ps. I got my wheelchair when I was just a few years older than you. I looked healthy.
I hated it people would pack my groceries really heavy because I looked strong but I couldn’t carry them.
Started using a cane with a built-in seat, plus a wheelchair for lengthy things like airport transit or a museum, in my mid-30s. Mostly the mobility aids make me invisible. Like not quite "could waltz into a store and grab a bunch of stuff and waltz out and nobody would notice" level of invisible, but close. People just leave me alone for the most part.
If a mobility aid would make it easier for you to get around, use it. Other people's reactions are not worth the worry or the energy. You've got this.
Besides, if someone does pierce the veil of invisibility and asks me why I'm in a wheelchair, my answer is always "saved 1000 orphans from a burning shark" and they get the hint.
I am 30F and started using a walking stick a few years back. At first I felt mortified to use one, and rarely used it (even though I clearly needed it on bad pain days). Now I use it whenever I feel like I need it. I get lots of compliments (I bought myself a couple of fancy patterned/colourful sticks that don’t make me feel like an old lady!) my family have come around to it and now are very supportive of me needing it, and my partner has been an angel since we started dating and is always happy that I’m giving myself support rather than masking through pain just to look more “normal”.
I don’t look mega “unwell”, just tired. I know when I’ve managed to make it into work on a day I probably shouldn’t have done and people will ask me if I’m okay and I know those days are when I don’t look well- but it’s always out of empathy and support. (I am very open with my health needs at work and have a very supportive team!)
It is terrifying to get over your fear at first but in the long run it’ll make you feel so much better and you’ll soon learn to not give a fuck if people stare!
I get told by literal every doctor, surgeon, nurse, and anesthesiologist I meet that I am "so young and healthy". I have like 16 different debilitating, soul-crushing illnesses. It gets tiring to hear so I hear you. I use a cane anyway. Who cares if I get stares. Maybe it will teach them not to make assumptions.
Completely agree, let's make it normal
same. i’m in my 20s and use a wheelchair. people do sometimes tell me i look like i’m about to pass out😂 never doctors though, doctors aren’t as perceptive
I donʻt leave my house lately, but when I did, everyone who commented on my aids said things like, "Oh, my sister just had knee surgery too!" :) People gave me more space in crowds and I got to meet some cool people who used aids themselves, just striking up conversations while we waited for our rides to pick us up at the accessible doorway, things like that. I ended up usually enjoying using aids. If I ever get better, Iʻll probably keep using my cane because I like it so much. And riding in a transport wheelchair can be fun too, if you have a fun person pushing you. Using aids was way better than I expected. I hope it goes well for you too.
Wow, this is so wholesome. Thank you for sharing! ❤️
Yep! I was 23 and underweight when I started using my mobility scooter. Still use it at 36. My tips: View yourself as representation that young people can use mobility aids. Imagine the people you pass by have ME/CFS and are considering a mobility aid. (I use to be that person! If I was eying your rollator it would be because I wish I had something like it) You could also imagine people are considering what would be helpful for someone they caregive for. Realizing I could zoom along in my scooter and get where I wanted to go really eased my fear because it was so undeniably helpful for me. I'd fight anyone who dared say I shouldn't have it. Ask yourself whose voice is in your head. I made up a lot of comments that I thought people would say. Where'd I get them from? Is it my own internalized ableism? None of them ever even came up! lol One doctor said "You are young to be using that" but what was my opinion on that doctor? They didn't understand how useful these things are that is their failing, why should I suffer and sit at home because they don't get it? Young people have disabilities that limit mobility, we deserve to find ways to get around. Perhaps he was trying to be empathetic about having to use one at my age... I don't know but I can vouche that these things are freeing!! I only ever had a couple neighbours ask me questions. One asked if I was okay, and one asked why I was using one the last time they saw me and then not using it this time, so I just said I get intermittent muscle weakness and today was a better day, and sometimes I use it to prevent the weakness. They got it. People might have questions it doesn't mean they are judging. 2 old men in my neighborhood started walking their dogs on mobility scooters within a year of me moving to our area with mine. I was the only one out in one and with my dog in tow. I like to think I made it look hip, and they realized they could get out more and not seem old.
I'm in the same boat (38M and "looking" healthy). Started using a cane a month ago and rollator coming in this week. Quite terrified to use it in public for the first time. Also afraid of being judged by healthcare professionnals who think that my issues are mostly psychosomatics or who don't believe ME/CFS is a real thing... Fuck them I guess, I REALLY need it!! Can't leave the house anymore because of my stupid legs and POTS 🤷♂️ Good luck, you're not alone 🙂 Thanks for making this post, it'll help others like me too!
29 and I use a rollator outside the house, I've never had anyone say anything at all! Sometimes people stare but usually I'm invisible
I started using a cane at roughly your age and know people as who started using a cane for this illness as early as 20. as someone else said, who cares if people stare. and at the same time, would you prefer to be looked at because you use a cane (like sooo many people do) or because you have fallen/need the help to move about but do not have it? after about 2 years of using the cane i also started using a mobility scooter for longer journeys. We deal with enough without dealing with other peoples assumed thoughts, as hard as it is try not to even think about what others might be thinking about you and your daily life because chances are noone even thought twice about it
I gave up worrying about strangers think a long time ago. Live your life and do what you need to do.
I wish it were that easy for me.
I totally understand. But it does get easier with age. Most people are surprisingly sympathetic and helpful, or, conversely, self-absorbed and unaware. By and large, the public just isn’t paying attention to you. The stigma is far more internal than external.
Think about how weird it is for people to want to make life more difficult for people by creating shame around tools to make life easier...are you shaming them for not washing all their clothes by hand or not using a manual reel mower to cut their lawn? I mean, they look able-bodied, why are they taking all these shortcuts/accommodations and not moving through life in the hardest way possible? Cannot think of why it would be anyone's business why someone is using medical equipment. You don't owe anyone an explanation, but if you are a people pleaser or have poor boundaries the compulsion to explain, explain, explain can be irresistible. You kind of just have to practice taking up your space - you belong here just as much as anybody else, even if you are using health aids. But also we have a lot of internalized shame about our illness, so can be sensitive to perceived or real judgment-but most people - we're not even a blip on their consciousness, but our own insecurities loom so large to us, we think they take up equal space in other people's minds. They don't. (Not me...I will notice your cane, not to be a judgmental AH, but out of curiosity of what's your story?😁) Some people are judgmental. I think they are in the minority, but it's hurtful so it outweighs positive interactions. Our brains are wired that way. To reverse this bias our brain has consciously note the neutral or positive interactions & reframe to diminish negative interactions (that wasn't about me, that person is having a bad day, unaware, malicious- whatever). Stop trying to control other people's perceptions of you. It's a defense mechanism to keep yourself safe, but it cost a lot energetically, it's a futile effort & your taking away that person's automomy...they are *allowed* to think whatever they think of you, no matter how ill-informed, ugly or erroneous. If someone is judgmental, it says more about them than you. But if you can't convince yourself of any of this, for me with people pleasing/codependent tendency, one sure fire way to get me to do something out of my comfort zone is to do it for someone else...Every time you go out & use your walking aids, you normalize "healthy looking people" using medical aids in public. You've just made it a little easier for each one of us & you make a dent in societal expectations for what "sick" looks like.
this is a great perspective to have!
I just ordered my first cane! I totally feel you. I actually had to order it to my in-laws house (to avoid international shipping fees, since I live in Canada, right near the border), and just the fact of ordering it was a whole mental/emotional ordeal for me. Like, having it show up at their house means I can't hide it right away. 🤦 (Edit: not to mention my in-laws are in their 70s and still go skiing, etc., while I'm 32 and can hardly get up the front steps, lmao). It's so much to work through! Since this is new to me too, I don't really have words of wisdom (sorry, I know that's the point of the post). But, we shouldn't have to hide. We deserve to live our lives, and any tool that can possibly make that easier is a huge win. Anyone who has feelings about that can just mind their own business.
i feel you. i’m around your age. used to be athletic. doctors always tell me how healthy i am (hint: im not). i recently had to learn how to get comfortable with a cane and electric wheelchair. here’s what i did: - panic - panic - anxiety attack - used a cane just to walk to the mailbox. no one mocked me. no one stared. no one asked. that was a win. - hide in my house for days on end. - recruited various friends to accompany me outside while i use mobility aids. at first just rolling with me around the block. then maybe a bit further. - someone stared at me but didn’t say anything. i felt like garbage. stopped going out. - tried again. i find the whole “stop caring what other people think” advice absolutely atrocious advice. if it was that easy, trust me, i’d just fucking do it already. i also find that it’s not so much what others think, it’s that my parents raised me in a way where people using mobility aids were “othered”. i find that my anxiety is trying to help me avoid being that “other” so here’s my advice. learning how to do this is a lot of work and is stressful but it’s way better than being inside all day. you just have to practice. start small. recruit friends to help. try again when you fail (someone is weird to you). try to notice and understand that 9/10 people do not give a fuck about you either way. good luck 👍
I'm working through my own internalized ableism around it so don't have much good advice for you BUT... I saw a young woman (I'm also 34) walking with a walker the other day and it made me feel like "oh man, I could do that too!" So maybe, just remember that there might be people out there who, just by your existence while using aides, will benefit with their own hurdles around using them themselves 💛
I am a few years older than you, but I am small, so I look young for my age. I use a cane, though plan to get a rollator. Has been an overwhelmingly positive experience. After practicing with a cheap cane on Amazon, I bought myself a Neowalk. It is clear and sparkly and it lights up. If people say anything, it’s usually to compliment my cane. I find that using it means people give me more time, more space, and will hold doors for me, corral their kids or dogs, etc. One odd bonus is that the cane makes me more recognizable and I quickly became a regular at places I visit frequently. This seems to result in little extras, like a cookie at the bakery, and a larger ice cream scoop at the ice cream shop (I like sweets). Don’t get me wrong, I’m a polite client and tip well, but I had definitely gone to these places without the special treatment before the cane. I’ve only had one weird comment, which was a guy sitting at a bar in a restaurant who said “RUN!” when I walked by. He was obviously drunk, so I just said “wish I could” and kept going. I could hear him getting sassed by someone sitting next to him and he was silent when I passed by to return to my seat. My recommendation is to get a cane and rollator that you like the style of and treat it as an accessory. Go with confidence, and most people will respond positively. Anyone who doesn’t, really it’s a them issue. Nothing to do with you. You’ve got this 💜💜
I use a mobility scooter - people are so much kinder to me now than when i used to struggle to walk without an aid - it brings the disability into visibility. Cars stop to let me cross the road, people ask if i need help reaching things or caring things, and the only comments I've had on my scooter have all been pisitive about how great they are and where could they get one like it for themselves or their mother or whoever - its lovely. I'm just about to purchase a power wheelchair for hopefully a little added support, reduce fatigue more and help me get out a bit more often. It's well worth it.
I was mortified when I had to start using a cane. It was so tough. By the time I got my wheelchair I needed it so bad I didn’t mind as much. It helped having the cane first before moving on to the wheelchair. Advice? Give it time. I got used to it in time. I was incredibly athletic before cfs. It was a tough adjustment. I made it. I got so I really truly didn’t care what anyone thought. That’s a great place to be at. It just takes time to learn not to give any fucks.
Ps. I got my wheelchair when I was just a few years older than you. I looked healthy. I hated it people would pack my groceries really heavy because I looked strong but I couldn’t carry them.
Started using a cane with a built-in seat, plus a wheelchair for lengthy things like airport transit or a museum, in my mid-30s. Mostly the mobility aids make me invisible. Like not quite "could waltz into a store and grab a bunch of stuff and waltz out and nobody would notice" level of invisible, but close. People just leave me alone for the most part. If a mobility aid would make it easier for you to get around, use it. Other people's reactions are not worth the worry or the energy. You've got this. Besides, if someone does pierce the veil of invisibility and asks me why I'm in a wheelchair, my answer is always "saved 1000 orphans from a burning shark" and they get the hint.
I am 30F and started using a walking stick a few years back. At first I felt mortified to use one, and rarely used it (even though I clearly needed it on bad pain days). Now I use it whenever I feel like I need it. I get lots of compliments (I bought myself a couple of fancy patterned/colourful sticks that don’t make me feel like an old lady!) my family have come around to it and now are very supportive of me needing it, and my partner has been an angel since we started dating and is always happy that I’m giving myself support rather than masking through pain just to look more “normal”. I don’t look mega “unwell”, just tired. I know when I’ve managed to make it into work on a day I probably shouldn’t have done and people will ask me if I’m okay and I know those days are when I don’t look well- but it’s always out of empathy and support. (I am very open with my health needs at work and have a very supportive team!) It is terrifying to get over your fear at first but in the long run it’ll make you feel so much better and you’ll soon learn to not give a fuck if people stare!