Am I DISABLED ENOUGH? Let's Talk about Disability. Chronic Fatigue Syndome/Myalgic Encephalomyelitis

Am I Disabled? Is it ok for me to identify as disabled? Is the word Disabled important?
I am chronically Ill and for a long time I thought that I wasn’t really disabled despite my physical difficulties carry out everyday activities. I thought that I wasn’t really disabled because I don’t use a mobility aid, because I wasn’t born disabled, I didn’t have a traumatic accident that made me disabled… I didn’t understand that I could be disabled even without those things.
Am I Disabled? YES
Do you Identify as disabled? (let me know in a comment)
My name is Elinor, I am a 21-year-old sociology student who has been living with ME/CFS for 5 years. I started making KZbin Videos consistently about my experience with chronic illness and mental health struggles in June 2020!
This video does not necessarily reflect everyone's experience with ME/CFS because we are all different and have different experiences. This is because ME/CFS can be different than I have experienced, and each person’s situation will be different and therefore each person’s story will be different!
Watch Next:
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Moving House with a Chronic Illness PLAYLIST: • Moving with a chronic ...
Weird CFS symptoms: • My Weird ME/CFS Sympto...
CFS/ME Day In My Life: • ME/CFS DAY IN THE LIFE...
UNIVERSITY advice for CHRONIC ILLNES: • UNIVERSITY ADVICE for ...
Graded Exercise Therapy: • GRADED EXERCISE THERAP...
Living with an Invisible illness: • Living with an INVISIB...
CBT Therapy for Chronic fatigue: • CBT THERAPY for CHRONI...
Causes of ME/CFS: • The CAUSES of CFS/ME a...
Follow me on Instagram / ellellell_brown
Follow me on TikTok / elinorbrown3
Thank you so much for watching!! Make sure to like, comment, and subscribe to see more videos from me every SUNDAY!
#chronicfatiguesyndrome
#Myalgicencephalomeylitis
#MECFS

[@ElinorBrown]

Watch Next! Causes of ME/CFS: kzbin.info/www/bejne/mXuTanWQdtaYh68 And remember to Subscribe! 💕💕

[@laurabone3228]

In so many situations. Including disabilities. Our culture tends to say "other people have it worse, therefore your struggles are cancelled out." Sad is Sad. Ill is ill. Disabled is disabled. Regardless of the struggle, it's a struggle. Someone's greater struggle does not cancel the validity of your challenge. Whether or not you get support. Those of us with invisible illness have a tremendous struggle getting any support. We deserve it nontheless.

[@koaxed]

this is so sensitive and raw and real. Every single day we want to be normal. Every single day we want to be at the best as we can for that day. We want to strive and be better. We want to kick the illness as much as we can in any given moment. The government doesn't want to discourage people from being well. Of course it doesn't! Knowing ourselves and what we're capable of, we're the experts of that. We want to do all that we can. Having good days, good moments, improving our condition mustn't be a shame! Having good days, improving our condition mustn't be a threat to be cast into the street. Government mustn't be cruel.

[@ElinorBrown]

Evan Ralston Thankyou! It is very tricky, but you know yourself best!!

[@findingagain]

Thank you, thank you. I have had such a struggle calling myself disabled. I've quite literally left school due to my illness (twice now.) But because my doctors will sooner yell at me to tell me I'm not disabled than think that what they're working on actually impacts me life, I feel like I always have to say "I'm not documented as being disabled but" to try and navigate myself in spaces. Sometimes it works; my teachers provided me so much grace even when they didn't have to. A lot of times it doesn't; I have been routinely denied access to resources that would let me do my work because I'm not "documented/legally disabled." How many people don't even have the resources to try...?

[@ElinorBrown]

that sounds terrible!! yeah, sometimes the systems are just against us!! hope your doing ok!!

[@genericyoutubehandle.]

The concept of being "legally disabled" is just,,, wildin

[@ElinorBrown]

Its Craziness, its not up to your government to decide its up to you !!

[@westendwickedadria]

I think the blue badge system is flawed. I have mobility issues with my hips as well as an autoimmune condition that affects my energy levels. There are a number of things I can't do like walking on gravel or using stairs in public (I crawl up the ones at home, not sure that's acceptable!). I also struggle with getting up from a seated position to a standing one and vice versa - which makes getting out and back into a car a struggle, particularly if I can't open the door very wide. The extra space a 'disabled' space would give me would mean I could go to way more places by myself and not rely so much on my husband. But because I can walk a couple of lengths with my stick on carpet at the assessment centre I don't qualify. This has had a huge impact on my ability to call myself disabled. I'm definitely not able-bodied but since I have no way of proving it I worry I won't get the help I need.

[@ElinorBrown]

I agree, I personally think it should be case by case not by diagnosis!!

[@TheWellnessAbbey]

This is a great topic and video. The government do define what is a disability but they *shouldn’t*. I get why they need to put parameters around who can access what e.g. the blue badges, but the inevitable and unfortunate effect of that is that some of us will in effect be told we're not disabled 'enough'. It's sad but I get it since support resources are finite.

[@HannahFrostFreespiritedwarrior]

So true! There were blatant lies on my last blue badge application result and got rejected even though a letter said I struggled to walk for 2 minutes and I’m worse now (without feeling extremely unwell). So glad you’ve now found calling yourself disabled helpful and realised it’s for you to decide!

[@ElinorBrown]

Oh no! that really sucks !! i don't think the blue badge system is effective at all to be honest! Thank you so much 💖

[@Maycat133]

Fantastic video that really hit home for me ♥️

[@sweetandmagical]

Great video that sounds many of us “dis” abled people can relate to , I sure can 💜

[@ElinorBrown]

thankyou

[@dianafields6475]

My husband is legally blind and is disabled, but honestly he has more freedom and can do so much more than I am able to do.

[@EccentricKait]

I have chronic fatigue & vestibular/chronic migraine. I feel near exhausted most days & tired good days & yet I feel odd about using a cane. I've been thinking of getting a blue tag but I keep holding back since my occasional 'good' days.

[@ElinorBrown]

You got this!

[@caideefish8281]

Thanks 😊

[@thatone_daniel]

hey hey ! I noticed you dropped in on Cathrin Mannings video and decided to stop by and check your stuff out! Sweet content! Keep it up! It motivates me to see others crushing it! #motivationtothemax

[@ElinorBrown]

Awesome! Thank you so much! 💖💕

[@heatherhartman6474]

People are WAAAAY too judgemental about people with myalgic Encephalomeilitis! The worst are people NOT in the medical profession. Suddenly they are an MD, a physiologist, psychiatrist, social worker and psychologist...they know it ALL, everything about you since birth and how you are feeling and how you should be feeling, etc. People can be idiots! 😆 EVEN OTHER DISABLED PEOPLE AND PEOPLE YOU THOUGHT WERE LONG TIME FRIENDS! You can tell them things and then suddenly they think the opposite of you!! I had a good example last week. My disabled "friend" accused me of having SEVERAL doctors (i have been seeing ONE family doctor for a LONG TIME since I got to the city. The other doctors are the SPECIALISTS my ONE family doctor sends me to! I am NOT on a bunch of opioids or other medications. I prefer natural treatments. I mean, COME ON! I thought we KNEW each other! I HATE being accused of causing all this to myself! My immune system and spine have been faulty since my birth!!Sure I went into the Army and had a tiring medical career...IM NOT LAZY EITHER! I worked my bootay off until i couldnt work no more! I need to make shirts that say PLEASE LEAVE ME ALONE!! 😂😂👍👍👍

[@ElinorBrown]

Yes! its so true! people with no medical training have so many suggestions about your health!! Its frustrating when people who you think should understand don't!! YES! and no matter what treatments you are doing, natural or pharmaceutical you deserve respect and understanding because you are doing the best you can with the resources that you have!! Yes! so many people thing we are lazy but usually we get into this problem by overworking ourselves and not recognizing/ignoring the signals to slow down, the opposite of laziness. I would definitely buy that shirt! 😂💖

[@jaybaebaesway3572]

I even have a hard time justifying myself using a cane and I broke my tibia and fibula last June. I have chronic pain from the hardware in my leg, and my ankle swells so badly after 20 mins of standing or walking. I also have chronic back and neck pain to top it off, but I literally can't crouch or squat without severe pain. I don't know why I'm so harsh on myself for using a cane (maybe bc my PT frowned upon it severely) and the stares are also pretty harsh.

[@ElinorBrown]

Unless there is a legitimate medical reason for not using a cane, i would say 100% just go for it!!! If you feel it helps you, then that's all that matters. don't let other people's judgment stop you !! 💖

[@Chirpingcherub]

I struggle with this too I don’t identify as able bodied but don’t identify as disabled either

[@ElinorBrown]

It is tricky, but you can identify wherever you feel comfortable 💜 it’s ok not to feel quite right in either category!

[@debmansbridge3923]

I got given a blue badge and I have ME/CFS

[@ElinorBrown]

that's great! maybe the rules have changed since i asked, or maybe i just spoke to someone really unhelpful?? glad you've got one tho!

[@annettesuterswiss]

I am a German speaker, so disability is "Behinderung" or "invalidität" in German. Invalidität means litterally"worth nothing", which I avoid. "Behinderung" is more someone with obstacles, so that is not judging.

[@AmandaJames-wp4uc]

I found what you said about you deciding how to express any disability you have encountered empowering & validating. I spoke to a ‘disability charity’ & they do not class CFS as a disability thus do not support. It’s classed as a ‘long term condition’ where you are expected to get better. Now there are disabilities where condition has & does improve . Who makes up these rules? I suggest we protest 🪧 to make clear what a disability is. Being denied to register your ability means limited if not existent access to support & help.. that in itself is disabling - the term itself is hurting people just like racism or creating any other way to exclude & ignore & wrongly identify - yet hurts the most when in need of help.

[@VintageRayne]

I figure if it’s socially acceptable to decide what gender you identify as, it should be socially acceptable to identify as disabled. Don’t jump on me. I’m not bashing anyone or their choices. Just simply making a point. :) I was also denied for the parking pass. My dr said they’re only for people who are wheelchair bound. She’s been awful in a lot of regards. I know the belittling & invalidation from doctors, SSI, & society as a whole has definitely been a huge contributing factor in my struggle to see how sick I actually am. I’ve been told way more times than I could count “it’s all in your head”. Floor me. My dr was 100% positive I have POTS. My heart monitoring test wasn’t done right. Tests came back fine. And just like that. Nothings wrong with me & I need a psychiatrist. 🙄🤦🏼‍♀️ PS. Love the PopSocket! What house are you in? I’m Ravenclaw. :)

[@ElinorBrown]

Yes, It is ok to both decide on your gender identity and disability status! It's all about freedom to be who you are and be respected by others for those identities. Maybe consider changing to a different doctor if they are not right for you! Thankyou, im a hufflepuff