I haven't bought a WHEELCHAIR yet. Why I keep putting off buying a wheelchair. Internalised Ableism

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After doing a couple of videos where I tried out wheelchairs, I decided I was going to buy one, and then several months passed and nothing happened. I’ve been putting off buying a wheelchair over the last 2 months and I wanted to talk about my fears and reasons for not having bought one yet. I discuss fear of investing in such a big purchase, the idea that buying a wheelchair is admitting that this is my life and the internalised ableism that makes me feel the having a wheelchair is in some way failing.
I do still plan on buying a wheelchair and I am working through these fears, to hopefully purchase one soon!!
Everyone with ME/CFS is different! So you or someone you know might have a very different experience with ME/CFS than I do at the moment! Also, remember that chronic conditions such as these can change dramatically over time, so my life may look very different to this in the future (and has be A LOT worse in the past).
Thank you so much for watching!! Make sure to like, comment, and subscribe to see more videos from me every other SUNDAY!
About Me:
My name is Elinor, I am a 22-year-old sociology student who has been living with ME/CFS for 6 years. I also have anxiety and depression as co-morbid conditions! I started making RU-vid Videos consistently about my experience with chronic illness and mental health struggles in June 2020 and I am aiming to hit 1,000 subscribers this year! I also love fashion, connecting with people in the community and being creative!!
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Social Media:
Follow me on Instagram / ellellell_brown
Follow me on TikTok / elinorbrown3
Contact Me:
Direct Message me on Instagram / ellellell_brown
For Business enquiries elinorbrownbusiness@gmail.com
#Babewithamobilityaid
#Chronicfatiguesyndrome
#Myalgicencephalomeylitis
#MECFS

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27 июл 2024

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Комментарии : 49

@greenlove8653 2 года назад

I read about a lady who called her wheelchair her "yes" chair. Yes, I can come shopping with you. Yes, I can go out for a drink. Yes, I can do [fun thing with friends]. I though that was a very nice way of approaching it.

@ElinorBrown 2 года назад

Thats so interesting, wheelchairs have definitely allowed me to agree to do things i never could have before!! 💜

@retropooka5228 2 года назад

I truly relate to this. I put off getting a wheelchair for YEARS, I had already gotten a bad experience from using my cane/walking stick. Only this July/August, after a lot of internal debate did I commit and buy a powerchair. It did come with a sense of mourning like “wow this is real” and I had to almost grieve what I could no longer do and it’s completely human and normal to do this. However, I regret not getting it sooner, my life has become so enriched since buying it and even though it does mark me not being able to do XYZ, it also means I can do so much more than I before, things I couldn’t do without my wheelchair that would normally cause pain, fatigue etc. Everyone’s journey is so different with mobility aids and it’s okay to be fearful or wary ❤️❤️

@ElinorBrown 2 года назад

It's scary, but I think that it will be worth it for me too!! 💜😍

@backup35 2 года назад

The wheelchair is just a tool to conserve your energy, to help you prioritise your energy demands ❤️ I had the same worries, but I took the plunge and bought my chair last week. Even if you only use it once a week, its once a week that you wouldn't have managed that task before. Its an additional tool to further your range!

@ElinorBrown 2 года назад

Yes! Thank you! Thats so true !

@PoppyRose14 2 года назад

I've had a wheelchair for around 4 years now, and becoming reliant on it hasn't been an issue at all. When I have the energy to go out without the wheelchair, I don't want the chair anywhere near me! The biggest challenge I have is actually making myself take it on trips out when I feel relatively okay at the start of the day but need it to conserve energy. In the time I've had the chair I've gone through periods of rarely using it, and periods of using it every time I leave the house, and that's okay because the severity of my symptoms varies. Anything that helps with managing your condition does not have to be needed every day to make it worthwhile. Good luck, and go for it! It's given me so much more freedom and I could not be more glad I have one ❤️

@ElinorBrown 2 года назад

That's so great! thats how i plan to use it too, as and when I need it! So happy it gives you freedom!! 💜

@lcozzarelli 2 года назад

An ME patient quote from the link i posted below: “This is one of my biggest regrets. If I could go back to my teens and twenties, I’d use a wheelchair without question. Back then, I was too worried about feeling and looking like an ill person (as if that’s a negative!), so I was stuck indoors instead of getting out. I should have said: “A wheelchair will not make me more ill. It will help my health stay where it is. It will help brighten my mood as I love being out of doors so much.” However, I just couldn’t. I had no idea of how ill I would soon become, as I knew of no one else with severe ME. Now I am severely bedbound. My electric wheelchair is in the spare room, barely used, as it was too late when I bought it. I know I should have been in a wheelchair every single time I left the house. That way, I could have *enjoyed* being out whilst conserving energy. That said, I believe in recovery and as soon as I am able, my hubby can put the chair in the back of the car and off we’ll go, to any place at all! I will soak up every moment!”

@ElinorBrown 2 года назад

Yep! I think a lot of people put of mobility aids for too long because of the stigma and fear!! when you are in a better place health wise the chair will be so great for you!!

@SS-tf6kv 3 месяца назад

Elinor, totally understood! My biggest fear in all you have mentioned is the fear that once we commit to scooter or wheelchair we will completely dependent on it for mobility. It's like we have given up on using our own legs. Become lazy. It may be quite common, the feeling. You make a great point! Go for it! Don't give up on your legs, but don't give up those adventures you spoke of!

@bionicbookworm3928 2 года назад

Literally all of these same thoughts and fears went through my head when I got my walking stick. To this day I STILL don’t use it as much as I should because I’m afraid of what people will think/say. But then, when I do use it, I feel so much happier because I can do more and be in less pain! It makes me feel more able to do things because I have something to assist me. When you get your own chair, you can make it your own, and it will be there for the days you need it. Get the chair - you’ll thank yourself for it!!!! Think of all the things you can do!!!!! ❤️

@ElinorBrown 2 года назад

yes! The fears around mobility aids are very common!! glad you stick is helping you! I totally agree!

@Michelle-qd9gm 2 года назад

I’ve used a walking stick since my kids was at infants school if you need it you need it sod what everybody else thinks

@ruby3200 Год назад

I know this is a year old video. But recently I have thought of getting a wheelchair, so I could go places like the grocery store, just to be in society again. and you have all my fears! It’s so hard as a young person like me, to need help, especially mobility wise.Your point about not already being able to walk makes sense, and applies to me, and makes me see the fear of maybe never walking again, in a way, is ridiculous, because I already can’t walk very much!🙄 I also understand stand the feeling of finality a wheelchair would give off☹️….. IDK maybe I should get one just for outings outside the house??? Stressful and kind of sad to think about😬.

@caseydavis7386 2 года назад

Hi Elinor. I struggle with multiple chronic conditions ( hypermobililty spectrum disorder, ME/ CFS, Fybromyalgia, depression and anxiety.) I can relate to your feeling like getting a wheelchair would be admitting that you are going to need it for a while. My It and physio recommend that I get a wheelie walker about 3-4 months ago. I couldn't face going to the mobility shop and trying one. About a month ago I noticed how hard I was trying just to stay upright and walk. And how unusual and ineffective my walking was. I finally went to the Shop and tried one. The relief I felt in using it was unbelievable. I was able to order one. I am a bit older than you are (36) but it is still really self conscious of using one at my age. When I picked it up I was happy. Then I was really sad. Sad that I needed one. Currently I am ok with using it. I have accepted that I really need to use it when I am out of the house. I still have my ups and downs emotionally with it but like you I am trying to realise that if someone has an issue with it it is their problem not mine. It sounds like getting a wheelchair will allow you a greater quality of life and feel more Included and spend more time doing what you want to do. Good luck with everything. Thank you so much for sharing your story and experiences with us. I really appreciate it. 🙂💖💐

@ElinorBrown 2 года назад

You're so right!! quality of life is a really important thing to consider when looking into mobility aids! Its understandable that your emotions around it change, we all experience that! I definitely do! most of the time im ok, with my illness and am very accepting of it but sometime sadness hits me! I think its completely normal tbh. Yes! not caring what people think is hard but it's what we need to be striving for!! 💜

@Michelle-qd9gm 2 года назад

I am a wheelchair user and proud of it without it I would not do half the things I do I don’t care what other people think they might be in a wheelchair themselves one day I hold my head up and also I go to concerts with my hubby in my chair and to the cinema racing all sorts In bed most of the time in pain but I try and do stuff when I can Am on strong meds for my pain and had major operations So I try and make the most of life when I can Don’t be ashamed hold your head up high and sod them that dosnt like it

@ElinorBrown 2 года назад

You're so right!!

@BetaFruAnna 2 года назад

I also had a lot of thoughts before I got my first wheelchar. I just couldn't admit to myself that I was so sick that I needed it. But eventually I got a manual one and it opened up a lot of things for me. Ofcourse it can be a hassle to bring it, but it makes it possible for me to actually go do stuff. That was about four years ago. A year ago I bought myself an electric wheelchar. And I love it. I cant wheel myself in the manual chair, I just dont have the energy to do it. With the electric I can go out on my own. It is such a freedom. A month ago I also travelled with it on an airplane, and the whole family was treated like VIP's. We got so much extra service that I have never gotten as ablebodied. Good luck with getting a wheelchair!

@ElinorBrown 2 года назад

Admitting you need something can definitely be super difficult! A wheelchair also opens a lot of stuff up for me too! There's lots of places I cant go because it is too far, and the chair helps me with that!! Yeah, i can't wheel myself for very long at all but I mostly have the wheelchair for activities with friends or family so will have people available to push me! That's so great! I have heard some horror stories about airports so its nice to hear that you had a good experience.💜

@barrytaylorprofoundlydeafi2479 2 года назад

Hi Elinor I am new to your you tube channel! Have you spoken with your GP or a consultant they would write to the wheelchair assessment team of your local council who would come out to see what sort of wheelchair you will need & then they would loan you one! Then further down the line once you get used to your wheelchair then maybe think about buying one! That's what social services are there for,they will not judge! Its like me 10 yrs ago finally admiting I needed a permanent indwelling Foley catheter & not nappies for my incontinence! Or after 25 yrs of having hearing aids finally wearing full time! So perhaps try one from social services you have nothing to lose & everything to gain 💗💗

@ElinorBrown 2 года назад

Thankyou for the suggestion! I have decided to buy my own because I think it would just work out better for my situation, but this is a great idea for anyone wanting to try them out!! 💜

@LesleyMLK 2 года назад

I finally bought a wheelchair secondhand. So happy with it. Wish I had done it way earlier. The thoughts are really hard and accepting this is your life is so scary. But it will be so helpful and give you a chance to do more nice things 💕

@LesleyMLK 2 года назад

Just listened to the rest of the video. Such great points!! Yes you won’t waste money, it’s actually helpful. The point about losing the ability to walk, or it not being worth the effort, wooow I needed to hear that. Being a wheelchair user is not a bad thing, YES!

@ElinorBrown 2 года назад

Yayy! I'm so happy for you! being able to do more is the goal!! Awww! thankyou! I'm so glad! It was a bit of a realisation moment for me too! 💜

@aliciahester593 2 года назад

I totally understand I am currently dealing with thoughts about what people will think but I was tired of falling also my family worries about my safety so I finally ordered one but it is taking forever for my wheelchair to get here

@ElinorBrown 2 года назад

You got this! I hope you get it soon 💜💜

@mayflower2158 2 года назад

This broke my heart when you started getting teary. I understand ❤

@ElinorBrown 2 года назад

thankyou

@Michelle-qd9gm 2 года назад

I take my wheelchair everywhere on holiday abroad tell your holiday company if you have a blue badge card for your card and they will get you a taxi paid by them to take you to your hotel instead of the coach which I can’t do and after hols they will get you a taxi back again they will pay for it so pls remember this when booking show you have a blue badge and book your wheelchair on the plane

@ElinorBrown 2 года назад

Thanks for the tip!

@AGirlCalledNaomi 2 года назад

Would it be worth speaking to someone in your care team? When I felt that a wheelchair might help me (gradually I went from occasional to full time use of a walking stick to then using crutches) I spoke with my neurologist (I have M.E myself) and asked for his advise and medical option on whether a wheelchair would help me and his answer was yes. It was so helpful to get his medical opinion and he wrote supporting evidence for me to wheelchair services and I was provided with a wheelchair through the NHS. For me I use my wheelchair when I need it; I'm and ambulatory wheelchair and for me and I know this is different for yourself and others but for me my wheelchair means freedom, independence less pain and fatigue, being able to enjoy going out and reduced payback and being able to do much much more than what I'd be able to do if I didn't have my wheelchair. Like I said I know we're all individual and people have different levels of M.E and different symptoms and abilities etc and I totally understand your fears about the commitment and 'is this it?' and 'will using a wheelchair be my new normal?' etc and it's really helpful that you've been making these videos on your thoughts and feelings around wheelchairs and not just for people with M.E but maybe things like hypermobility disorder, PoTS, Functional Neurological Disorder, Chronic Regional Pain Syndrome, MS etc.

@ElinorBrown 2 года назад

I unfortunately do not have a care team, as i was dropped from all ME/CFS services when I became an adult! But I am so happy you were able to get some help with accessing a mobility aid!! Yes, a wheelchair is also be more freedom and less payback for me! Thankyou, I am aiming to make relatable content that can be a little helpful xx

@cassied.6731 2 года назад

Even if you end up recovering soon you can sell it to someone who needs it, and then you can get some of the money back and someone who needs a chair but can't afford one full-price can get a chair they need. Until then, it'll be useful to you and help you be better able to experience life. As long as spending that much money doesn't hurt your ability to live your life then to me that new freedom would always be worth it, even if you only need it for a little while. Of course, this is me being a hypocrite because I know I should probably at least try a cane on days when I need to hold on to the world around me to stay standing and yet I keep putting it off because of a fun combination of the "what if I'm not sick enough?" existential disabled person dread, as well as some sweet sweet internalized ablism. I'm probably gonna ask my mom if I can try out using her cane when I next see her, because she has an adjustable one she uses sometimes for her MS and I know she'd understand. Especially when she first got it she hated using it, and she still sometimes doesn't use it as often as she should. She's gotten more comfortable over time with using it though, which is nice to see.

@ElinorBrown 2 года назад

such a good point! I feel your dread and the struggle with internalised ableism!! but you can do it!! its definitely been worth it for me! (i have cane videos on my channel if you need a bit of motivation) You totally got this!! Trying it out it a great idea, especially in a such a safe environment. It would be super cute if you could encourage each other!!

@kaybrown1007 2 года назад

Perhaps you just need to go online and buy one 😀😀💜

@ElinorBrown 2 года назад

I think i probably should 😍💜

@Michelle-qd9gm 2 года назад

It dosnt change the person you are in a wheelchair

@ElinorBrown 2 года назад

so true!!

@genericyoutubehandle. 2 года назад

Was expecting "theyre expensive" and that's it

@ElinorBrown 2 года назад

They are expensive, but the main issues I've been having are more emotional than practical.

@finnroohomebrewing1846 2 года назад

Walking cane yes, wheel chair no. Don't go there. I know hoW hard it is but the best thing we can do is to stand and pace. Plan our day and do what we can. A wheel chair is going to weaken your legs and body and make our condition much worse . I can see a chair logistics being a night mare. Cheers and take care.😎👍

@ElinorBrown 2 года назад

I have decided to get a wheelchair but I will not be using it full time, i will usually be walking and will definitely be continuing to use pacing to manage my condition. I understand your perspective because i have also had that fear, but I plan on continuing to work on my fitness when i am able and using the wheelchair when I am not. The wheelchair is for things i cannot do usually and will not be replacing activities I can do as I will continue to walk in those situations.

@finnroohomebrewing1846 2 года назад

@@ElinorBrown nice one Elinor 😎👍

@fightingquads9198 2 года назад

Unless you have a physical disablement, broken legs, paralysis, structural issues, etc you should not be using a wheelchair. Millions of people have CFS and do not require a wheelchair, may I suggest that perhaps it would be a good idea to consult a therapist, someone who can help you work through whateveer psychological issues you are experiencing because of this that's causing you to erroneously feel that you need or require a wheelchair.

@naomieggl 2 года назад

People with ME/CFS do have a physical disablement! It’s not a psychological issue. Science is finally discovering the fact that our bodies are physically incapable of walking significant distances. Get your facts right! There’s no evidence for claiming ME/CFS is a psychological disorder.

@ElinorBrown 2 года назад

I do have a physical disablement, ME/CFS is a physical disablement. yes, there are millions of people with ME/CFS all of which have different levels of illness, some who cannot get out of bed and some who have a fairly 'normal' life. Whether others need wheelchairs is not my business but I think that it would be useful for me which is why I am getting one. Its as simple as that. Don't worry, I have spoken to psychologists for my mental health but they do not cure or treat chronic fatigue as it is not a mental health condition.