As a 51 year old who has had long covid, leading to ME/CFS I just wanted to thank you for your videos and blogs. I now have my very first powerchair, and it has been liberating! It will take longer to feel comfortable with other people and their comments, but it really is making a difference to my life.

@babykillingcadillac6719

8 ай бұрын

i also had long covid and am suspected to have developed fibro as a result. i've been dealing with chronic pain for the last few months. i've considered using a cane but am worried of what others will think as i'm only 20. seeing your comment makes me feel less alone. i'm glad your powerchair has been useful and a positive addition to your life

I've had a lot of those! I was diagnosed with epilepsy at 49 years old in 2019, but I've had various chronic illnesses throughout my life. However, when I started using a walking stick & then the priority seats on the bus, I would get stares and comments from elderly people who somehow thought they were automatically entitled to those seats, even though they were probably fitter than me! I also have an imbalance in my nerves, so regularly have falls. When questioned about why I take my time rising from my seat, I reply "I have SIS failure, so I fall a lot if I rise too quickly!" SIS means Structural Integrity System. I nicked it off Star Trek, but it's a fancy way to describe my nerve imbalance! 😁

@elcucuy1770

3 жыл бұрын

Star trek😅 Take care mate Hope u live a good life

@LifeOnHoth

2 жыл бұрын

😀 "If I get up too quickly there's a danger that the hull is buckling! Please hand me a self-sealing stembolt and a hyperspanner, will you?" Hehe sorry. I can't contain my enthusiasm when someone use trek to describe their challenges. :).

@alwaysathome

Жыл бұрын

@@LifeOnHoth "She'll fly apart Captain!"

So glad I found your video today. I used a mobility scooter to get around a zoo yesterday. It was super busy and in one area me and another wheelchair user had to manoeuvre around each other. I made a comment about it being a bit tricky to get around in such tight spaces and the guy behind be said ‘here’s an idea, get up and walk!’ I was so upset as I’d spent half the day fighting to walk, before the pain got so intense I had no choice. Thankyou for showing me that it’s ‘ok’ to use help and that it’s not something to hide. People need to be educated and your doing an amazing job. Thank you ❤

@LifeOfPippa

Жыл бұрын

I'm so, so sorry you had to hear that - that makes me really sad. I hope you managed to have the loveliest day possible in spite of that ignorant comment and that your payback isn't too rubbish today xx

@DisneyMusicalsandAnimals

Жыл бұрын

@@LifeOfPippa ❤️thankyou so much for your kind reply. Still in a fair amount of pain but thankfully it’s the school holidays so I’ve got a week before I’m back to work. Time to rest up. Hope you’re having a ‘good’ day xx

@AmethystWoman

Ай бұрын

Don't you love it too why they think they own the right to your medical history too. So sorry we meet ignorant mean people. Its time for us to stop being embarrassed like I am. I've stopped leaving the house. I can't deal with people and even drs like this. In the US mean and making fun of the disabled is now socially acceptable. And they are removing HP spaces. Anyone else noticed?

I also have an invisible illness,plus I am 66 yrs old and very obese. But when I was younger,little old ladies would ask me to reach something on a high shelf, I had to get my son so that he could reach it for them,because i couldn't raise my arms above my head without screaming in pain. I really don't think they needed to hear me scream,it's good to have a son and a tall one at that:)

Great video Pippa. I use an NHS prescribed wheelchair and have an adapted home. I'm also work part-time and I recently had to file a complaint at work because it was suggested that in a fire I ought to get out and walk! I know this only happened because I can techically walk as I've worked there for 5 years now. However, clearly if I'd been paralysed from the waist down it would not have happened.

Today I got stared at by an older woman while I was using my wheelchair, because I dropped my phone on the floor and had to move my feet in order to bend down and get it back... She didn't say anything, but the judgemental stare was there... I'm 29 and dealing with symptoms of POTS, plus a narrowed disc in the lower lumbar area of my spine that makes it extremely painful to stand and walk. My heart rate was at 151 earlier today when I wasn't using my chair. After using my chair, I stayed below 130. At one point, I was even under 110! That's rare when I'm not sleeping!

A few months ago on my birthday a relative of mine took me to a restaurant as a birthday gift. The restaurant was packed and somehow our reservation got messed up so we had to wait longer than expected. I had my cain with me and needed to desperately sit down, but due to it being so packed and busy all the seats were taken. Even with my cane, no one moved from their seats, but luckily I was able to sit at the bar, but the seats were very uncomfortable. After sitting at the bar for about a hour I just chose to order my food to go so I could leave and return home as soon as possible because I started to get a really bad headache and feel really sick. Because of that bad experience I recently purchased a rollator walker that comes with its own attached seat. This way if I ever get into another situation where I need to sit, and there are no seats available, I will be fine because I will have my own built in seat to sit on. Its sometimes a struggle being disabled. Not having a available seat to sit on and having to open heavy doors to walk into a establishment are the worst. Why in the hell do they make doors so extremely heavy? Ugh!! It definitely sucks when you have body weakness, and or pain and don't have enough strength to open the door.

I am 20 years old and today my physical therapist just told me that because of my joint instability in my hips and knees that I should get mobility aids. I forgot what specific type he said but it’s like two canes. I feel devastated. I didn’t think I was at that point yet. Just thinking about the situations dealing with the public is embarrassing. I have had people confront me already without mobility aids about my handicap parking pass and so on. I always feared that in the future I was going to end up having to use them, I just didn’t think it would be so soon. I really don’t know how to put it into words. I have a feeling that you can understand what I mean from your own personal experience.

@elcucuy1770

3 жыл бұрын

Instability in hips U have problems in ur lower back too?

@margaretannkukla9362

3 жыл бұрын

@@elcucuy1770 yes upper and lower spine.

@elcucuy1770

3 жыл бұрын

@@margaretannkukla9362 hope everything's good buddy I have been suffering from Hips and lower spine instability for 3 years🥴 and I'm 19.

@alwaysathome

Жыл бұрын

This happened to me a couple of weeks ago and I didn't handle it gracefully. My doctor said I needed a walker and I said no. I told him they might as well buy my headstone and casket now and just set them out in the front yard for me to look at every day. I'm going to have to get over this, but it's going to take me some time. I'm 43, but that means I've been stubborn a long time...

I've never thought of naming mobility aids! I MUST NAME.

Great video! Something I've been thinking a lot about in terms of sunfower lanyards especially is that more often than not there for *staff*, not random people, to help recognise someone with an invisible disability. So at first I was like oh ok that's a cool concept - but then I was like...shouldn't staff just be...trained to...respect and support people even if they don't wear one? Idk, I don't mind on the tube because god knows who you'll be needing empathy from, but I actually resent the idea of having to ruin my outfit with an ugly bloody lanyard so that staff will do their job and take me seriously. But then maybe I'm just a grumpy bum.

@LifeOfPippa

3 жыл бұрын

True enough, people shouldn't have to disclose that they're disabled in order to access the support they're entitled to. I'd draw the line at some things but I actually don't hate the lanyards tbf, I think they're quite snazzy :D

When someone ask me why I’m in a wheelchair I simply say, I have several chronic conditions that make walking difficult and very painful. To me that’s the simplest way to say it as it’s true.

Thank you so much for sharing your experience. I have long covid , an invisible and new/ unknown illness. Having to use mobility aids myself, it takes so much courage to accept this and feel able to use in public. I've suffered so much stigma and discrimination. I've been told long covid doesn't exist, its caused by vaccines, it only happens to obese people, its all in your mind and had suggestions I need to exercise and I'm not trying hard enough. Watching your video's means so much to me and I know I'm not alone in my struggles

@LifeOfPippa

Жыл бұрын

Thank you so much for your kind words Jess, and I'm so sorry to hear about what you're going through. Sometimes the stigma can be just as tough as the physical side, so I'm really glad to hear you find comfort here and know you're not alone xx

You totally just described how I feel/been treated with mobility aids. Thank you for helping me validate my feelings with struggling to use mobility aids - it gives me a little courage to keep going xx

Yes i agree we should talk about disabilities, and i think we should start our conversations in SCHOOL.

Definitely need to challenge peoples perception on all disability

I'm an ex teacher and my mom is visually impaired, so advocacy is my default. The few times that people haven't given me a seat I just aimed and fell on them - preferably with my elbows aiming for sensitive places. I've also used my ex-teacher voice on a streetcar (Tram) "This streetcar isn't moving until I get a seat." I flagged the driver down, and he waited until I gave him the thumbs up. Next time people refuse to give me a seat I'm hitting the wheelchair ramp button - which means the driver gets out. I can't wait to get my wheelchair! I rented one for a week this summer and things were so much better. People were offering me help all the time (which will likely get annoying...but nicer). I've learned that if people aren't giving me enough space to use my canes (I use 2), I say "Watch your toes!". It really works.

Yes having a invisible illness does bring out awkward & sometimes intrusive questions from people. I haven’t had too many questions as to why I use mobility aids at times. I don’t always have to use them however when I’m asked, I prefer not to make my response lengthy. I just say, I have multiple illnesses and need assistance with support aids. And just leave it at that…. I suffered a traumatic waterskiing accident more than 20 years that left me with spinal cord injuries and have developed psoriatic arthritis and fibromyalgia since. 9/10 I don’t leave my home when I’m struggling with walking and in alot of pain. I don’t seem to manage standing for too long before I need to sit down. I’m shopping for a decent wheelchair that has to be lightweight and easily accessible when. Thankfully I haven’t had too many people ask me why I’m using mobility aids over the years. I had seen a sign on the back of a wheelchair once that read, Please don’t start a conversation with me regarding usage of my wheelchair. This man probably had far too many questions over his lifetime. Blessings to you from Australia

Q: “What happened to you?” A: “My body decided to enter its granny phase of life early.” A add-on: “I might look perfectly fine but if you look “under the hood” like a car, it’s a whole different story!” I notice that when I’m vague, I get less of the dreaded “have you tried xyz?” crap 🙄 I get they’re trying to help but I’ve probably already tried what “worked for their friend” in the last 10+ years, and they’re not even a doctor, let alone a specialist.

Thank you for sharing your testimony.

Brilliant as always Pippa well done xx

@LifeOfPippa

3 жыл бұрын

Thank you Sandra! xx

Great video. It was different than I expected, but interesting discussion.

I think your reply of "long term illness" is perfect. You don't need to be ashamed, embarrassed, or sad that you don't have a wittier comeback. People are curious, and that's ok. You can't control them, and they certainly have a right to their thoughts. But giving them a simple reply and moving on with your life is a fantastic way to deal with it. As a fellow sufferer of ME/CFS, I might try this. Most people leave me alone, but I will say this: some of the people who I thought were judging me for using a mobility scooter are actually interested in it or want one, themselves. I wish everyone who could really use one could get one.

My answer to what happened to you, then!? “Alien abduction. There is no KY in space 🤷🏻‍♀️” then I watch them process, and die inside.

Don't change anything about yourself just to please others. It can also be true that some people we encounter have hidden disorders or mental health issues, so not every case is just abuse or bad reactions. Even if I was more visible in my disability and I know people who are more obvious than myself too but they are treated the same ways. Disrespect is disrespect. The world is nastier than it was when I was growing up as people are more selfish and more rude. I am glad there are wonderful human beings like yourself. Just be kind to you. If you need to rest and use your wheelchair then it's fine, really it's good management of your illness if people say that you don't look ill. I am happy myself and that bothers people because they need us to be suffering so that can carry on feeling 'better' than us. I made this really bad mistake to be chatting to a customer in my shop (yes I work and have my own business) and I was saying how tired I was as I had just moved house into a wheelchair bungalow... and she is staring at me as I was standing up to fill the shelves and well you can guess that she is confused that my wheelchair is invisible but really it is not, it is right there by the till hidden by all the stock on display and she never noticed as it looks like an office chair. We all have these bad reactions but don't let it define who you are. We are ourselves not how other people 'react' to us. I thought that the 'feeling' different or being isolated was going to get better in time but it never has and now I know that it will never be how I feel that it could be with everyone just accepting disabled people as being like equal valid human beings.

This video was so wonderful! So glad I came across it. ❤️

@LifeOfPippa

3 жыл бұрын

Thank you so much Sonia!

Thank you for these videos. I broke my tib/fib last June, and the hardware in my leg hurts. I'm in the US, so I can't afford PT or any other treatments/meds. My PT before I had to stop bc of insurance, told me not to use a mobility aid bc it would only make it weaker and worst. My leg swells VISIBLY within 20 mind of standing or walking. I have no other option, and do not qualify as disabled in the US which is very frustrating since I'm in school 9-5 mon-friday with severe pain and nerve damage. I even feel guilty or bad for using a cane bc of the stares I get and the questions. I feel like I'm not "disabled enough" bc the government doesn't recognize me as disabled and it costs too much to even apply. The stigma is real, and I wish young people with disabilities were more represented.

@Carlie_flower

3 жыл бұрын

Oof relatable. Hang in there. Don't feel bad. If you think a mobility aid could help, use one. Continue with some PT exercises at home but it's not worth it to put yourself through extreme pain or worse reinjure yourself... Took me years to be ok with that...

I mostly ignore people whenever I'm using my cane. Especially if I'm surrounded by people who are used to seeing me without it on a daily basis.

If people ask me whats wrong, I like to tell them that Im super awesome and thank them for noticing.

Sunflower lanyards are a big help

Ciaooo spero che per ragazze e ragazzi ci sia un domani migliore meno barbiere le persone più comprensive ciaooo 🤩

I've had CRPS for 45 years. I hated being defined by my disability so when I moved and had a clean start, I started not leaving the house if I needed my crutches. Yeah, not good for my mental health. Eventually I decided you know what, I need to leave the house and I got back on my crutches. A woman at church laughed and said did somebody kick you? She asked me that every week. Eventually, when there were prople around I asked her "as a spiritual person, what do you think I could have done wrong that would make people kick me every week?" eventually when you say sprained ankle a year later people start wondering. I usually end up at "it's a long story..." now that I'm trying to use a wheelchair, I've just stopped going to church. I'm feeling embarrassed which is sad at 69.

@christinesmurthwaite8660

23 күн бұрын

same here I couldn’t get lifts and no one talked to me so like you I stoped going

HA literally exactly in the middle of my undergraduate degree and just got a diagnosis

You're pretty, young & vibrant so you dont meet expectations. I'd give them your full (probably in Latin) medical description as though you expect them to understand it since they asked. Don't know how it is in other countries but in the U.S. disabled people have federal civil rights. Citing the civil rights issue quiets many inquistions.

Hi Pippa, you express yourself very well. Although I have different long term health issues, like you I sometimes need mobility scooters to get about. I am considering getting a power chair as my condition changes and I was wondering how you or others who read this went about getting yours choosing and financial support. I will be visiting NAIDEX and the Motability shows this year so hope to test some out, I am sure I will get these questions answered, it would still be good to hear your experience. People fall into different categories, ignorant ignore them, curious and awkward - choose or not to educate them,I am sure you could add more. Finally you gave me such a belly laugh with the “shark attack” answer, that’s funny 😂.

@LifeOfPippa

Жыл бұрын

Thank you so much! Good question about the funding, the 'official' routes can be limited but I asked the question on Instagram a while ago so people's comments on this photo might be helpful (instagram.com/p/CY9nw7Es3bB/). Naidex is the ideal place to test them out, hope you enjoy and find The One for you!

I used a walker due to very bad case of pain in my knees arthritis in both knees. And someone else saw me at parken restaurant and she saw the walker bye and said that she is have problems with walking around with the injuries from the bridge collapse in August 1,2007. It's gotten worse.

Loved the edits! What you're talking about really resonated with me - the incredibly awkward tube incidences I've had with my badge and looking like a healthy young person. I don't often use a mobility aid - it's just been a handful occasions in the office I've been given a wheelchair and then I've also had people (quite innocently) ask what has happened/what have I done - and then it's the awkward 'nothing's happened, I just have a chronic illness which means sometimes I can't walk'. I don't think i'll ever get over the cringe factor. But the shark attack response is brilliant - looking forward to using that one one day! Thanks for sharing, Pippa

@LifeOfPippa

3 жыл бұрын

Relatable in so many ways! Thank you so much for watching xx

@koajerome3476

3 жыл бұрын

You prolly dont care but if you're bored like me atm then you can watch all the new series on instaflixxer. I've been watching with my gf for the last couple of months :)

@willievihaan6643

3 жыл бұрын

@Koa Jerome Yup, I have been using instaflixxer for months myself :D

@foolgazer

2 жыл бұрын

The way that people suddenly shut down and clearly want to run away after being told "nothing happened, it's a permanent disorder" is hilarious. I'm just genuinely not sure why they thought otherwise or what they expected/wanted to hear?? I always assume they wish I had some wild accident story that they can go home and tell people about

Struggling with balance and having to use a cane because of a sudden and bad worsening of it, I found the worst and best of people. Some are understanding and some are so judgemental. I felt hyper aware of having to use it at first but not anymore. I don't like being said "oh I hope it goes away soon" like lol. I wish it was temporary, but since it's a prob in my brain I don't think it will go away.

My disability isnt that invisible but it was a great video good job, i using mobility aids for progressive neuromuscular disease❤

Oh yes been through some experiences because someone thinks I am mickie taking. One that stands out is one day at the till I had a basket and went for two items but got to the till packed up with this basket. I was trying to put items on the belt when the lady lol behind me suggested that I should use both hands to put my items on the counter. I turned round and said ! if I do that everything will end up on the floor 2. I am in pain and just about managing to put the items on the counter while balancing the basket. She turned round and said she was in pain too becuase of her kidneys. Well I am sorry I got upset about this and said well you should know exactly how I am feeling and how hard this is for me. So tough that you have to wait while balancing your basket totally on the side of counter what is your PROBLEM. Just like you dear and many more people judge us because they feel uncomfortable. Last time I was asked about what was wrong with me and I knew they would just be no wiser even if I filled them in. So I just say I use the scooter or stick just cos I can.... They are left with their mouth wide open and I carry on as best I can. Sadly it's their problem but they turn it on us. Sometimes I have said it's okay it's not catching!

Brilliant video. I don't use any aids. I have used a walking stick a couple of times, once somewhere nobody knew me and it was the only time I feld confident using the disabled seats on a bus. And once when it was icy on the school run and I found it mortifying. Luckily, I've not had to use it again. Funny because I'm always really open about having MS. The worst time is when people think I'm drunk because when I get tired I start to sway a little! Not a good look at 9am after dropping my son off :D

@LifeOfPippa

3 жыл бұрын

Oh goodness, I can only imagine the school drop-off situation! I'm so sorry you've found it tough, I can totally relate to being open about being ill but struggling to disclose... other things that come with it. It's a strange one... Thanks so much for watching!

@kelviannaepperson3677

3 жыл бұрын

I don't use aids but I think now that I should I have CP in my legs and lately I've been feeling weakerand I think a cane would help

@VintageRayne

3 жыл бұрын

I would definitely feel more confident somewhere there was basically no chance I’d run into someone I know. I’ve lived where I am now for over 20 years (off & on). My family is well known around here & it’s just awkward when said people think that just bc they know who I am that they can ask personal questions. And then go discuss me, what I’m doing, & my health with my mother. Which brings me to that point. My mom has always under minded me & always believes I’m just being over dramatic. So that doesn’t help. Especially dealing with her telling me “So so saw you at the store & saw you using a mobility aid. Why were you doing that? You don’t need that. Is your mental health ok?” Shite like that. So I just suffer through. 🤷🏼‍♀️

@katnaish

3 жыл бұрын

@@VintageRayne Aww, that is heart breaking. I'm so sad for you. And you can't exactly distance yourself from your own family. I hope you can find a way to educate your mum better 😥 hugs

@VintageRayne

3 жыл бұрын

@@katnaish Ty. Hugs back :)

Unfortunately this subject pops up all the time, you put it very well, just yesterday I was called out for parking in a disabled space, (even though I displayed my badge) unless you have bits missing people think your just faking it.

@LifeOfPippa

Жыл бұрын

So sorry to hear about your experience. Change cannot come soon enough!

Brilliant well done ✅🙂✅

I use mobility aid and now I am wondering what life will be like as I age

I have ms but im also younger atleast i look it and the stares i get are ridiculous yes im using a wheelchair yes i need it. Just because i look good doesn't mean i feel good.

You're a lovely well-spoken girl Pippa... may I be ur Virtual Granny in Italy?!

@LifeOfPippa

3 жыл бұрын

Aw, thank you! I'll gladly accept that offer!

i just tell people that the military likes breaking their toys.

❤

People are jerks can't mind their own business basically looking for a fight. Disability has no age it can happen from birth or accident . The people harassing disabled people have no clue that it can happen to them just because you where born fine in a moment that can change and judging what you see is not what it appears.

Hey, in the around 2min point your video has a really loud noise and I want to say that's hard for people with spd, misophonia and in my case also hypervigilance to deal with!

@LifeOfPippa

3 жыл бұрын

I know, I'm sorry! I live in a block of flats and I can't control the noise my neighbours make unfortunately (they love a good door slam) but I'm trying to get better at pre-empting it so I can stop talking and start again. I have noise sensitivity too you have my empathy!

@LifeOfPippa

3 жыл бұрын

Oh gosh, I'm so sorry - while watching this back I just realised it's the sound effect I added rather than the background noise! Noted for the future, thank you for the feedback!

I was thinking about the feeling awkward about telling what was wrong but I kind of just tell them what happened “oh yeah I had a stroke!” Bc I did? And don’t have the capacity to feel bad oop

I think they should be in your shoes 👞 👟

You're very cute. Even though you've got an invisible illness, you're still smiling. Cheers!

What sickness you have?

@Chirpingcherub

2 жыл бұрын

Considering she doesn’t like when strangers ask in public she probably doesn’t want to answer it right now. You should maybe check her channel if she has videos on it:)

❤

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