Do I Have a Disability?

By | February 26, 2020


Hi everyone, today is one of those videos
where I just want to sit down and have a chat with you. I feel like I do this
about once a year, where there is a particular topic that I’ve been
stewing in and I’ve come to the camera and I want to, as I’ve said in previous
videos, show my work, so I want to talk about a topic that I haven’t
necessarily come to a definite answer on but I think it’s important to show your
progress, to show to show your thinking on a certain topic because I think on
the internet we can be made to feel as though we should always have not just
the hot take on something but a definitive answer and an answer often
that doesn’t change. I think because when we’re posting things on the internet
it’s evidence of our thoughts and that seems like a rigid thing. Someone could
find a video of mine from five years ago today and if they didn’t look at the
date think that that was me today and that I would, in the present, say all
those things that my past self is saying and agree with them entirely, and that’s
not how humans work, we evolve and we change and we learn and those are all
good things. So this is a video, the title of which is “do I have a disability?”
that I have wanted to make for a while but I haven’t really known where to
start, there are so many places I could start
and to be fair I have also been really nervous to make the video as wel,l but
today is the day that I sit down and I talk about this and I would love to know
your thoughts in the comments section down below as well, If you’re new to the
channel, my name is Jen, hi, I am an author and I review books, so I speak about
books on this channel but I also talk about disfigment as well and the
history of fairy tales. So there were several things that made me want to
create this video, one of them links in with what I just said in that on the
internet there are videos of our past selves and our past opinions. When I
started making this channel, making these videos, over five years ago I knew that even though what I wanted to do was talk
about books I was also going to have to make a video
where I talked about having EEC syndrome which is the medical condition that I
have and which affects various different parts of my body but the most obvious
one is my hands. I have missing fingers, I have arthritis, I was born with
syndactyly, I had lots of operations, skin grafts, pinned bones, so when I started
talking about books I also took the time to make one video where I talked about
having EEC and all of the things that that has meant in my life. I made
that so that it would make my life easier, really, so that when people said
to me “what’s wrong with your hands?” because so many people ask that and
still do, instead of having to explain every time I could just link that video,
and in the description of all of my videos right, at the bottom, it’s always
linked and people discover that video all the time, and I agree with the
majority of the things I’m saying in that video about my condition,
the thing that is slightly different is just the way that I approach talking
about it now. In that video there’s a definite vibe of “I have a disfigurement
but I can do everything that you can do! Let me prove it, let me show you all of
the things that I’ve done, let me talk to you about how I learnt how to play piano,
let me you know all of that stuff ” and similarly I also made a video around
that time with Leena, my friend Leena over at Leena Norms, she has a series on her
channel called “stupid questions with Leena” where she
gets people to come on who she then talks to about a particular topic that
they embody, quite literally in my case, and she asks them questions that
maybe other people are thinking but would be too nervous to ask and one of
the questions that she asked me in that video was “do you consider yourself to
have a disability? are you a disabled person?” and in that video I say no and no
is the answer that I have pretty much always given all of my life and there
are several reasons for that. The main reason I think is that because I thought
that that word was for other people to claim and to own
and I felt as if I used that word it wasn’t fair to those people, like it was
a piece of pie and if I took it they wouldn’t have it anymore, and you know
I’m not a wheelchair user, I am not X, Y Z, it’s just it’s slightly strange
really that we have a word like disability as an umbrella term for so
many things, it’s not as though if you tick all of these boxes then that is
what means you have a disability, it’s really subjective, so that’s the
main reason I’ve never said that and we’re talking about ticking boxes quite
literally it’s not a box that I have ticked on forms, if we’re talking about
HR forms, you know, you get those forms where it says “and what’s your ethnicity
and what’s your sexuality and your gender” and I’ve always happily been tick
tick tick tick when it comes to sexuality, yes I’m queer, and then when it
gets to the “do you consider yourself to have a disability?” box
I always pause on it, I always agonize over it and then I used to tick “no.'” If
there was a box that said “do you have a disfigurement?” I would have fully checked
that box but I just didn’t know if I should check the disability box. I have
spent a lot of my life, as demonstrated in that video talking about having EEC,
pushing back against those things, feeling proud of myself, or trying to
feel proud of the way that I look and advocating for visible difference, but pushing myself really hard to achieve things for the sake of
achieving them and therefore passing as an able-bodied person, and I find that I’m cringing within myself just saying these things. There is a
really fine line between pushing yourself because you want to achieve
things and testing yourself and that’s all really good stuff, and pushing
yourself and testing yourself and damaging yourself for the wrong reasons,
and it’s such a slippery slope you, can start with the best of intentions
and you can end up somewhere else, and I have done that so many times, and it’s
it’s a very strange thing to articulate and admit which is why I think I’ve
always said “no, I don’t have a disability” because by saying I don’t have a
disability I never have to admit to all of that bit of my life. Because it’s not
just you that’s going through something, it’s the people that you love,
the people who are closest to you and you want to try and lead as “normal” a
life as possible for them as much as for yourself because people who love you are
upset if you’re not doing so well and I think we can all relate to this, we don’t
have to be just talking about disfigurement/disability we can talk
about mental health, we can talk about you know any number of things, there are
just certain aspects of life that we don’t talk about sometimes. Another
reason that I used to say that I didn’t have a disability is because my body is
a lot different now than it was even five years ago, so whilst I could get
away we’re saying that I don’t have a disability and I’m not disabled five
years ago, that I could pass for an able-bodied person, I find it
increasingly difficult to do that and that is all part and parcel of you know
I suppose the meaning of disability and what it’s like having a disability
because your circumstances and your body changes all the time and therefore maybe
the language and the words that you would use to explain your condition and
yourself change – and I always wanted to do a video… you guys asked me to do a
video talking about my eyesight and also my alopecia because I’ve made videos
talking about those things when they were new health issues for me, and if
you’re new and this is confusing I’m sorry I will link
everything down below, but I made a video talking about my hair starting to fall
out, I made a video when I found out that my eyesight was changing, and I could
potentially lose my sight, and I said I would check in with you and talk
to you about those things further on, I just never know when is a good time to
do that because they’re such gradual things, it’s not as if a huge event
happens and I’m like “all right! now this is a milestone and now I’ve uncovered how I
feel about this particular aspect of it so now I can sit down and I can clearly
lay out the things that have happened and the way that I’m feeling about them”. And
this feeds into something else I want to talk about: it’s boring! It is so boring, you
guys, I think I have said this before in a video, we don’t
talk enough about the lived experiences of having a disability or a
disfigurement like all of the staff outside of “I’m doing
good so you can do good, let’s empower each other!” like that’s all great but I
just mean the lived little experiences of having a certain condition, it is
boring for me to live through, it would be boring for me to sit down and tell
you about. You don’t want to hear about it. But also I’ve noticed if I do not
talk about the lived experience of having a condition the gap between me
and people’s understanding of me, it grows like this slowly over time and I
have noticed that with people that I love dearly, with people who are friends
of mine, family members, because I don’t know how to talk about my condition,
because I don’t want to burden people or bore them or any any of that, it just
means there are certain things that I just don’t talk about and I forget that
other people don’t know about them and that’s kind of strange.
As I said I have no definitive answers it’s just something I have noticed, so
friends often don’t realise how often I spend
in hospital, how often I have to go in and see the people who take care of me. I
have seven different specialists that I see for a variety of different things,
last week I had four hospital appointments, this week I’ve had one.
It’s not always that much time in hospital but there are clusters here and
there and it all adds up, and it’s not as if I am actively hiding those things,
it’s just it’s my existence and we don’t always talk about every part of our
existence with everybody. For instance when I filmed a weekly vlog the
other week, I mentioned on Instagram that I was going to do that and I said “is there
anything that you would like me to include in that video?” and someone said
“could you show us your morning routine?” which was like a very well-meaning
comment, I have nothing against the comment at all, and I just thought “no, I
know I can’t do that”. I immediately, of course, was thinking of
morning routines, of those YouTube videos where people show you their
morning routine, where they film themselves getting up and making
breakfast and doing a bit of yoga and all of that stuff. I can’t film my my
morning routine. So my mornings? My mornings now, I wake up, obviously, I
wake up and I can’t see. tTat’s what happens in the morning when I wake up. I
don’t want to repeat things for people who’ve been around a while and watched
other videos but it also seems a bit mean of me to be like “I’m not going to
explain here, if you’re new there’s a footnote with a video if you want to go
find out more” so let me try and explain very briefly. EEC effects different
parts of the body, it is a clefting syndrome which means that you have more
or less of certain things and as I said I have fewer fingers, I have a cleft
kidney, you can be born with a cleft palate, I didn’t have that but I did have
a jaw that was not entirely normal and had to have operations on my
jaw and my teeth. My eyes, I was born with cleft
tear ducts, so I have to have tear ducts implanted, the
channels in my face that connect my nose, eyes, ears, all
of that, they’re all cleft too which means that I’m susceptible to infection, I have
chronic blepharitis, and what happens with age with people with EEC is that
your corneal cells, so the film of your eye, starts reproducing incorrectly, your
body thinks that it’s sick (it’s not) and it attacks it and it replaces the cornea
with scar tissue, similar to what’s happening with my hair now, my hair is
falling out and because my body’s attacking it thinking I have an illness,
which I both do and don’t, and is replacing my scalp with scar tissue.
There is no cure for this currently with eyes, replacing the cornea doesn’t work
because it’s a genetic blip and it’ll continue to reproduce incorrectly, your
body rejects it, so I am monitored constantly by Moorfields Eye Hospital in
London for changes to my cornea. Because I’m getting older my eyes are just
deteriorating in general in various different ways,
so when I wake up in the morning I can’t see, my eyes are extremely dry, my eyes
now do not produce enough oil to lubricate themselves so I have to use
eye drops throughout the day but in the morning because I’ve been asleep when I
wake up I cannot see until I use those drops, I cannot open my eyes so I have to
have those drops very close to me and if I don’t, if I can’t find them in the
morning that’s really scary because if I try and open my eyes without using those
drops I will damage my eyes, my cornea will get
scratched, my eyes can’t repair that and that essentially is also how you end up
losing your sight as someone with EEC because your eye just essentially cannot
protect itself. So if I was to film my morning routine, that would be the first,
shot me waking up and trying to see again after that it would be me taking
lots of painkillers to compact my arthritis and it
would be me getting into a bath in order to warm up my body and my joints so that
I can move and hopefully work for the rest of the day, and then it would be me
getting dressed and bathing my eyes which I have to do twice a day as well I
have to bathe them in a special solution, and then it would be me getting
dressed and picking what headgear I’m going to wear today to cover up my hair
loss, so it’s just kind of that tiny comment of someone just asking “what is
your morning routine?” gave me the impetus to make this video as well
because as I said these are things that I do not talk about because they’re
vulnerable things and I also want to say it’s entirely fine to not talk about
these things, we all have things that we don’t talk about, that we don’t share and
we are always curating the self that we show to others and we should only share
things that we feel absolutely comfortable in doing, and that’s why I’ve
never done it before because I think I have spent the majority of my life
wanting to pass, wanting to say that I am not a disabled person, hiding certain
things about myself, both because I haven’t known how to talk about them,
because as I said sometimes it’s boring, and also to protect the people around me,
you know it’s a degenerative condition EEC and it’s upsetting for the people
who care about me and I don’t want them to be upset, so I’ll often pretend to be
much better than I actually am. And me doing that.. there was a privilege in that,
because I could do that and as I said I find that harder to do these days, but
also I think I’m just having a newfound self-respect for myself. I used to value
myself based on my output and my achievements instead of just who I am
and if I don’t respect who I am all of the time, encompassing everything in
all parts of my condition, not just the days where I’m feeling great about
myself and I can get stuff done, then how can I expect other people to do
that. and how can I expect people to have a greater
understanding of disfigurement and disability if I only share certain
aspects of that? I’m not cross with my past self for making videos talking
about the disfigurement because I was honest in those videos and I have talked
about certain struggles that I’ve had but I just haven’t talked about a more
practical side I think of living with a body that doesn’t always do what you
would like it to do. And some of those reasons is because the things that make
my body vulnerable are really silly. I have ended up in A&E at Moorfields on
several occasions now because of a rogue eyelash because, as I said, my
eyes now can’t deal with anything. I cannot be around cigarette smoke, I
cannot be near any kind of grit in the air at all. I get terrified by these
things now because they can be extremely dangerous for me and it’s ridiculous
that I can be taken down by an eyelash that I have ended up in A&E on more than
one occasion at Moorfields, a specific eye hospital, because an eyelash got
stuck in my eye and it felt like I had a brick in my eyeball, because that’s the
reality of what my eyes are now like. You know I shared photos from our hiking
trips, as you know Mr. M. and I like to go hiking, we go to the
Lakes and last year we went to Arran, which is an island off the coast of
Scotland and we did lots of walking and I had a great time but I didn’t talk
about the fact that if I go hiking for a week, towards the middle/end of the week
every morning I’m in tears because I’m finding it difficult to walk. That’s not
something that I’ve shared, and I mean I don’t know what I’m saying by sharing
that now. I’m someone who painted her flat even though the ligaments are now
coming off the bones in my hands. I am someone who yesterday tried to make
cookies and because my eyesight was so blurry
I put bulgur wheat in instead of brown sugar. I don’t have, as I said, I don’t
have answers I’m just sharing these things because this is
this is my everyday life: arthritis, hair loss, eyesight, and I sometimes get
surprised by the disconnect between who people think I am and who I actually
am, and that’s to do with society’s perception of illness/disfigurement and
disability and it’s my own fault for the way that I have presented
myself in the past but it’s a complicated thing, right? I think that
with disability and disfigurement, the narrative of our stories is so often taken
from us and people assume so many things about who we are, I feel that we
overcompensate so that we’ll meet somewhere in the middle. I’ve had job
interviews as I mentioned before where I’ve not got the job because people have
assumed that I can’t do things that I actually can do, and every day when I
interact with people there are so many microaggressions with people not wanting
to come near me because of my hands and a few weeks ago there was a woman on
the tube who started shouting that I was contagious and telling everyone to move
away from me because she was noticing I was missing fingers and these kind of
things — not that extreme, the shouting, but the stares the glares the people taking
photographs, the people who work in shops who don’t want to hand money back to me
and put it on the counter, don’t want to touch me — that stuff happens all the time,
every week, multiple times a week, but these are things I don’t share because it’s
just part of my life and when I mentioned to some friends of mine that
that woman had shouted that on the tube they are outraged and it just made me
realize that they didn’t really know what my day-to-day life is actually
like, and we can never know what anyone’s day-to-day life is like but I’m going to
take responsibility for the fact that my body has changed and I’ve not talked about it
with people because it’s a vulnerable thing, it’s a difficult thing to talk
about, but I’ve reached the stage I think whereI have to mention these
things because I can’t not mention them anymore, so if someone said to me today “Jen
do you think you have a disability, are you a disabled person?” I would say yes, I
would tick that box because me ticking that box is not the thing that makes it true — it was already true.
And I’m not saying that you should particularly care about how I identify
in that respect, that’s not why I’m making this video, I thought it will be
helpful to make this video because I think it probably will resonate with
some of you watching this, not just when we’re talking about disability but
maybe when we’re talking about other forms of identity, or how we just in
general present ourselves to the world and the aspects of ourselves that we
choose to highlight or not highlight. I think we all understand that the
internet is a place where everyone is always
performing, as they are in life, I don’t mean that in any kind
of negative way, I don’t mean that it’s secretive or sly or anything like that,
we’re always performing ourselves and we’re always performing a certain role
depending on who we’re talking to, in what circumstance, and the Internet is just
another one of those roles. I think it’s completely healthy to show certain
aspects of yourself and keep some aspects of yourself private for privacy
reasons, I think it becomes a different thing entirely when you are lying to
yourself and I think that that was what I was doing, and what I had been doing
for quite a long time. So those are my thoughts today and there were probably
lots of other things that I wanted to say or things that I wanted to
articulate in a slightly better way but haven’t, such as the case. Maybe I will
watch this video in the future and think “well, past Jen, I disagree with you
entirely!” *laughs* I hope that you are all having a good week, and I will speak to you soon.
Lots of bookish love. Bye! x

100 thoughts on “Do I Have a Disability?

  1. Beverley Chong Post author

    Thank you for making this video. I know it must have been difficult. You're one of my favourite youtubers and i'm always in awe of your organisation skills and productivity. I'm even more in awe of you now after watching this. I have M.E. and a lot of days it takes me ages to get ready as i'm even more tired and in pain in the mornings Like you, i dont share my illness wiith many people and I look perfectly fine once i put make up and get dressed so if people see me out and about they don't even know i'm ill. It's quite frustrating but again it's not really their fault as i also find it boring to talk about. I'm happy that you now feel you can though. You're amazing!

    Reply
  2. AthynVixen Post author

    I'm speechless. Thank you for sharing your experiences with us Jen. Lots of Love <3 x

    Reply
  3. r.hunter patterson Post author

    As a carer for my daughter who has a disability and my grandson who has a type of autism I have always found your videos on disability extremely helpful in understanding our situation and feelings towards my family.I am getting older now nearly 70 and have always had arthritus so am having to slow down a bit.Was feeling very guilty about not being able to look after my daughter and grandson properly but am now going to have a long chat to my whole family and explain how I need a bit of assistance myself.Like you I felt that my condition was boring and goodness we wouldn't want to bore anyone.If you can open up about how you feel on the internet I certainly can in my own home.Thank you so much you have been more helpful than you can imagine.I don't really know what to say about your situation except I am very saddened by it and wish you all the best wishes in the world.xxx

    Reply
  4. ReadAlongWithSue Ward Post author

    Having a disability is meaning we are limited in our life and doing daily tasks that others take for granted. I’m disabled. Hubby is too and my daughter. It was difficult to acknowledge that to myself personally because I just “coped” I just “managed “ and you adapt as your illness progresses right? You just get on with it.

    I relate to that.

    Yes, you weren’t lying to yourself you were just managing. As we get older though, our bodies just let us down further then we get the wisdom to understand we need to be more honest to get support.

    Bless you

    Reply
  5. Paul Winchell Post author

    I have no words. Im watching this laying in bed, at the start of a migraine oh fun. You've helped me try and become a better human. Its daily work but worth it.

    Reply
  6. Squirrel's Bookshelf Post author

    Thank you for choosing to share, Jen. I appreciate being given the opportunity to listen.

    Reply
  7. Sarah Sophina Post author

    OMG! I have ectodermal dysplasia that affects most of the coverings of my body, including my corneas. PROS lens from Boston Sight have been life-changing. Most of the manifestations of Ectodermal Dysplasia are painful, but nothing like the cornea. I understand that everyone on the internet thinks that they can cure all ailments, but I do hope that you look into these lenses. They create chambers that protect and moisturize the cornea. I have had a significant reduction in my pain and in my vision. I have spent my life trying to pass for normal, until I couldn't. I hadn't realized that this was the case until recently. Thank you for posting this video. Feeling less alone has helped me feel less like a failure for needing some help. Best wishes

    Reply
  8. Natalia Hernandez Post author

    Thank you for sharing this with us. You know, I have been dealing with eye floaters for 5 years now and they are annoying and I hate them. I hear about your eyes and the problems that’s you have and I have to say I feel horrible about me complaining about something that even thought had not cure and it only bother me in bright light and ect, is nothing compare to what you are going through.

    Thank you again for your sincerity and openness Jen ❤️

    Reply
  9. Lesley Lickley Post author

    It never fails to astound me how awful people can be towards another human being. I've worked in a hospital department that deals with facial disfigurements and can't understand what someone looks like has got to do with anyone else. I can understand curiosity but to actually go up to someone and say negative things is unforgivable.
    As for disability, I have had osteoarthritis for a few years now and I've only just started classing myself as disabled. I'm unable to walk unaided but because I've always been active it's very difficult to admit that I just can't do things like I used to. I found this video very useful, thank you for sharing your thoughts with us.

    Reply
  10. Sarah Sophina Post author

    Thank you for posting this video! Several things ring true to me. I have Ectodermal Dysplasia which effects most of the coverings of my body, including my corneas. PROS Lens from Boston Sight have been life-changing for me. They create a chamber that keeps the cornea moisturized protects them from all of the crap in life that constantly assaults the corneas😑. I too have alopecia and have to wear alternative hair….i feel so ashamed of that, despite it not being my fault. And, the topic of disability is one that I struggle with choosing it as a label or description of myself. I have spent my life trying to prove that I was just like everyone else, and I am not. I can no longer pass as normal. It is somehow comforting knowing that I am not alone, and in fact, you who seem to be pretty neat is having the same struggles.

    Reply
  11. Book Balderdash Post author

    I was very interested to listen to you sharing some of your "boring" daily bits of your daily life. I feel benefitted and bettered from having learned a bit more about your daily experiences of life. I completely understand not sharing for your vulnerability and privacy, but I would like to just ensure that it's known that I don't find it "boring" and I dont think other book people, who are people who are generally compassionate observers of other people, would think that either.

    Reply
  12. Janice Allan Post author

    You are an amazing woman. Such an inspiration Jen! Thank you for such brave and honest videos. X

    Reply
  13. Kathryn Rossati Post author

    This did resonate with me very much, especially the lying to yourself part. I found out last year that I'm autistic, which gave me so many answers for my behaviour all my life, but I was also afraid that if I gave in and truly accepted that I really do function differently to the majority of people and struggle with things that many don't, the whole idea of being disabled became real. And, as you mention, I didn't, and still don't, feel that I should say I am because I don't fit with society's view of it and somehow I'd be taking away from other disabled people. Thank you so much for sharing all of this. I can't say any of it surprised me, as I've seen your other videos on your condition and I know full well that what ends up on camera is only a tiny percentage of your actual life, but talking about the daily things we usually keep to ourselves is a brave thing to do.

    Reply
  14. Vanessa Moura Post author

    I’ve been here for a very long time and it was just when she mentioned and showed her hand that I noticed. Maybe because what she has to say about books it’s more interesting than that for me. Also because I have an autistic brother and my whole life it really bothers me when people were mean ou even curious of he being different. You are amazing and with, what could be a challenge or reason for not to do, you are achieving so much! You are an amazing!

    Reply
  15. Laura v. D. Post author

    Thank you for making this video. I appreciate the honesty and vulnerability you showed, and I hope I can do the same someday 🙂

    Reply
  16. Jakki Kite Post author

    Wow! Your EEC syndrome is so different than mine at the moment! I don't have hair loss or arthritis yet but I am just beginning to notice my vision getting worse. I also have cleft palate and I have less fingers, and the heat really affects me due to the deformed sweat glands. I think EEC presents very differently in everyone with it and it's really interesting to me to hear other EEC women talk about their experiences because it's so so so rare. Like, this is literally the exact video I needed because getting older with EEC is getting really scary. Thank you so much for this video, I really appreciate it. 🙂

    Reply
  17. ThePurpleBookWyrm Post author

    Very thoughtful and informative video! A few things you said really resonated with me, especially the part about not feeling like it's legitimate to call yourself disabled. I don't have a physical disability or disfigurement, but I've suffered from chronic mental illness for more than half my life now, and have often felt like my troubles and pain is not "worthy" of serious consideration (I know it sounds weird), especially, ironically, compared to someone who has a serious physiological medical condition like yourself (not terribly logical either, I know, since "mental" and "cognitive" disabilities are both recognised by social security services in France and Belgium, at least). I tend to downplay my psychiatric history to myself, though whenever I give the details to someone who asks, they seem to think I've been through a lot (not terribly good at gauging what people think is normal, or serious, etc… because I don't have a social life I guess lol).

    Being concerned for your loved ones, and not wanting to burden them (with concern or care) is also something I strongly empathise with. I tend to keep things to myself if I can, not complain, not make a big deal out of things, because I'm conversely quite privileged and lucky in other ways. It's weird that guilt plays into this at all, but it just does for me, for whatever twisted reason.

    In any case, I think you project a lot of compassion, gentleness and positive energy through your content, there's something very soothing about watching your bookish musings! 🙂

    PS: And also, you have my undying respect for learning to play the piano with the cards Nature dealt you, that is truly impressive!

    Reply
  18. Wilde for Classics Post author

    Wow. I can relate to so much. Whilst our health concerns are different the mental and physical repercussions and feelings are similar. You expressed what I feel perfectly. It would take pages and pages to articulate my reactions and thoughts.

    I have fibromyalgia, Lyme disease, Raynaud's, herniated discs, alopecia, arthritis in both hips and knees and extreme insomnia so need pills to prevent my organs from shutting down. I don't talk about it much. Like you say, it's boring.

    However, my conditions are invisible so a acquaintances say, "You look great! You must be ok!" No. As you know, sometimes you have to get out. You have to live. You mask pain. You may seem ok but your body may be screaming in agony. I used to be so active. People sometimes say, "Why don't you go to the book shop or coffee?" Yes, sometimes I do…but some days I cannot get dressed.

    But you have people frightened of your condition. I don't. I'm sorry you reminded of this again and again.

    But sometimes I have very good days in spite of things. It helps me not to dwell on pain or to play into fear avoidance. I cannot think far ahead as degenerative conditions are daunting. I'm a strong believer in hope that tomorrow may be better. And sometimes it is. 🙂

    I'm unable to work but am able to read and do other things I love. It is possible to live a full life! People who go through hardships are often able to show more compassion and empathy. The pain I experience daily has caused adjustments…and I've learned to practice kindness even more than before. Whilst nothing about said conditions is good, good has come out of it.

    Thank you very much for filming this video of a difficult topic, yet disabilities and pain are what so many of us live with. Everything you expressed was spot on. Well done. 🙂

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  19. Musings of a Cat Post author

    I struggle with saying I have a disability or I am disabled. One part of my brain agrees with it because it's technically correct, I am not able to do some things, but another part of my brain doesn't want to agree because I loathe not being able to do things. I wish there was an in between word.

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  20. brush 2 canvas Post author

    Thank you for charing your thoughts on and experience with this.
    Lot of food for thought. Looking through the comments gives me the feeling that videos like this are very needed.
    All the best and may your health stay stable 💕

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  21. Romy sews Post author

    I think if you're comfortable with sharing then this is important for people to hear. We hear all the time about people tutting when apparently healthy, able bodied people park in disabled spaces, or use a disabled toilet, or having time off work because they look fine. Or people having misconceptions about the different ways you can be disabled or ill or have other needs. And I think it's important and it's our responsibility to educate ourselves. I'm glad I know about your condition so that if I meet someone with it, or something similar, then I can respond in a polite and respectful and helpful way. But I get how with all of the 'perfect' social media posts about waking up looking totally glam and constantly posting about how great life is that it must be alienating if you feel that your life isn't like that. Sorry for the ramble, but I think it's something we need to keep talking about 🙂

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  22. Hannah Landsberger Post author

    Thank you for sharing this with us Jen. I came to terms with the label of disabled about a year ago and am now trying to navigate the gap between what other people see me as and my actual experience in the face of worsening symptoms. One thing I do want to say is that while of course I understand if you choose not share details with us, they are interesting, at least to me. Just because the struggles you are facing are small in the grand scheme of things doesn't mean they are insignificant or a story you shouldn't tell. I love hearing about other people's "medical lives"– it feels like oxygen when I'm starving for representation. And I think able bodied people will be interested too, because you have a unique perspective that's been shaped by your experience. Your videos are so great and they really help me. Thank you.

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  23. Maduvathi Venkatesan Post author

    I truly appreciate you sharing your experiences with your audience. Thank you for making the videos you do!

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  24. Donna Turner Post author

    Thank you for sharing. I started following you because I love your book reviews and adore your Franklin series, but now I look forward to all things, Jen❣️

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  25. Debora Johnson Post author

    I have chronic back pain. It is a unseen disability but a disability just the same. I appreciate your courage in posting this video. We live lives that are so different than everyone. It is so painful on so many levels. Yet we spend a lot of time trying to be “normal”. It is exhausting and painful It takes a long time to come to terms with a disability. Thank you

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  26. Jennifer Lenihan Post author

    I love you Jen. You are an inspiration. I love your channel. I am sorry people are so cruel to you. I hope you will do your channel for many years.

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  27. Elizabeth lussier Post author

    You are awesome and strong… I have multiple sclerosis and now I'm ''disabled'' and the only way that I can speak about my life as ''before'' and '' after''. Its hard to live with a sickness who change and happen to give our body other pains. I've just discovered that I have another condition that can't be operated because of the ms. I totally understand what you go through.
    I send you my love…. smetimes a little kindness from a stranger can go a long way!

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  28. MyBookishEmpire Post author

    Jen, as someone with an eye condition (non-degenerative) I appreciate the candid look you provide with your experience. Your discussions are great for informing the public and making them think how they interact with those who are "different" than themselves. These videos are a gift of contemplation to the world, thank you. I am constantly frustrated by the reactions people have towards difference, your examples in this video show just how pervasive they are in our society. I hope that one day no one experiences negative reactions to difference.

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  29. Laela Benatti Post author

    Dear Jen, l follow your video because of the books but as l am Italian ( l live in Bologna) and l am 55 so we didn' t study English at school when l was young, l have understood only a little of what you said and l am very sad for this because l would have a lot to tell you.I can understand almost everything in written English but it' not the same when l listen and you don' t talk very slow😊. My daughter will come to Norwich this year to study English and American literature , so l will ask her to translate every single word you said because this is an important topic and l don' t want to say stupid things as l have done just now.What l think could certainly be not important for you but it is for me and l don' t want to use wrong words as l have understood too little and l ask you if it would be boring for you if l talk about this after my teenager and not too kind🙃 daughter has translated every single word. For now l can only answer with a question : what do you mean when you say disable? I have 10 fingers but l suffer since l was very young from a severe form of major depression. You cannot see well but if l see better than you, l see everything gray because l don' t know what could be to be happy and before the birth of my daughter l always thought about suicide. Now l can' t because of my responsability. The funny thing it' s that l am a clinical psychologist but as l feel not very well🧟‍♀️, l have another work that let me be also crazy without damage people😜 What is my morning routine? It' s searching a reason of going out of bed🥴🥴🥴🥺.You are a beautiful , clever, funny woman and l think that your family and friends are lucky to have your love and friendship.A VERY BIG HUG😍😍❤ Laela

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  30. SarahTheBookGeek Post author

    Thanks for this video Jen ❤️ I resonate with it a lot. I have arthritis and crohns and my struggles usually involve not being taken seriously by people because I “don’t look sick” and I’m “too young” to have chronic illnesses

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  31. Ambitious Reader Post author

    I have multiple conditions that cause frequent pain and extreme fatigue. I too lied to myself that I could pass for able bodied until I could no longer hold a job. That was when I finally had to accept myself. I'm sorry that people are so rude to you. You speak eloquently and seem like a lovely person. I do hope you know how important it is to keep raising awareness. We're not bored.🙂

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  32. Nathan Foung Post author

    Thank you for sharing your thoughts. It has helped me rethink my own personal situation. Much appreciated. So glad I found your channel.

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  33. Shauna McKelly Post author

    Hi, Jen. Thanks for making this video. I had so many thoughts while watching. I was born with cerebral palsy which affects my ability to walk, maintain balance, and perform many gross motor skills. However, like you, I am able to do many things that sometimes others think I cannot. For me, having a disability means having a condition that significantly hinders my ability to perform tasks that I need or want to do. Identifying as a person with a disability is a statement of the reality of life. The problem is that the term and the topic is loaded, and because society doesn't often talk about daily struggle in a conversational way, people with disabilities often become liminal individuals. Talking about disability is important because it shapes who a person is and how the person thinks, the experiences one has and the people to whom one relates most easily. To choose to remain silent or speak up is a personal choice, no one else can make. Talking about a disability as part of my identity validates me as a person and gives others permission to notice it or its effects without letting it define me as a person. I send you much love from sunny California.

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  34. Lisa Clapham Post author

    Thank you for sharing this, Jen ❤️ This must have been a difficult video for you to make but I really appreciated it. Like you say, we don't know what someone's day really looks like and, living with a lifelong mental illness, I could totally relate. Much respect.

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  35. Michele Pastele Post author

    Dear Jen – I also have various disabilities from a general medication condition. I try to 'pass' when I can, although as I have aged, it is harder to hide certain limitations. I struggle with what I feel and wish and think I can or should be able to do, and the actual realities of day to day things. My will and determination can't change the realities of my limitations.
    Thank you Jen for sharing some of what goes on with you day to day. It certainly brings out that people shouldn't judge by appearance since we are never able to know what is going on in someone else's body or heart.

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  36. karolien herroelen Post author

    Thank you so much for sharing your story, I have a degenerative condition as well. I recognize so many aspects of the struggles you talked about. It's really difficult to talk to People without it getting repetitive or them freaking out.

    An other problem I have is finding literature including a chronic illness that talks about the experience of living with the illness. Giving things up, like having children you really want. The closest I find are stories about People with cancer, but even they usually have a fixed conclution, they get curied or they die. I haved found a book about having to live with giving things up one little thing at a time or struggling while been able to pass for An able bodied person 😔

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  37. Laela Benatti Post author

    My " kind" daughter said that l can use subtitles.Now l listen again and maybe l understand more❤

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  38. holly exley Post author

    Thank you so much for sharing this with your audience Jen. I appreciate you. 💙💙💙

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  39. Fee de Carabas Post author

    Sending you love and strength, Jen. I can see Arran from my window and I am thinking of you this morning <3

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  40. Laela Benatti Post author

    Dear Jen, now using the subtitles, l think l have understood a little more about your phisical condition. l didn' t know that you had pain in your body and l didn' t know that it was a degenerative condition. In some other videos l saw that you had less fingers in your hands but l didn' t ask myself why, because l was watching your video for the tips on books to read and because you are highly competent. The goal of the videos was listening to that and not a game of guess how many fingers you have. I thought it was only a peculiarity of yours and l didn' t see any problem about that.Now that l know that you have problems in your eyes and pain for arthritis in your body, this make me very sad because you suffer.I didn' t know about surgical operations you had to undergo and the pain. I think that if a person like me follow a you tuber who talks about books, shouldn' t be interested in your morning routine or your 😊intestinal rhythms.They are intimate matters! I know that people can be cruel but only stupid (very stupid) could think that if they touch you, you can be contagious. Now l' m 55 but when l was a teenager people stared at me because l am very tall ( 180 cm) with big feet and as l lived in a very little village there were no girls like me and many bullied me. Now l am very happy to be tall and my major depression has not that origin but something worse that happen to me when l was young. So, dear Jen, do you consider yourself a disable? I would say yes for the phisical pain but absolutely NO for your hands or your alopecia. A big hug, not too big because l am a mad giant and you have pain in your bones😍❤🤗.l' ll hope you had understood my strange and poor English .I' ll wait for your tips on books to read. 📚 Laela

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  41. Debbie Vocat Post author

    Jen, you are awesome, courageous, articulate and simply inspiring. Your openness is a lesson to us all. 😍

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  42. Elizabeth Hopkinson Post author

    Good video! I can identify with struggling whether to tick the “disabled” box. Mostly I don’t, for one of the reasons you said: I tend to think it’s for people whose condition is worse than mine, who find things hard day in and out. But sometimes I do, because I want to people to understand that, just because you can’t see my condition, it does affect me. Like you say, I might look fine to people because one day I’m at ballet class or going on a trip to London, but they don’t see me a day or two later when I need the cat to walk on me in bed in order to be able to move. It’s a weird one…

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  43. Tirsa van Sprang Post author

    Thank you SO much for this video Jen. It is important to find a balance between keeping what we want for ourselves, whether to avoid boring other people with our day to day lives or to avoid being vulnerable, and sharing information that can help people understand your situation, your day to day life, and maybe even help ourselves be frank about our actual struggles to ourselves.
    (I've slowly been coming to terms with that recently. So the timing of this video really hit home)

    I wish you all the best and strength in the moments that you need it most.

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  44. msj5492 Post author

    I think it is so important to acknowledge that people and their opinions do change. As we go through life and we gain more experiences and meet more people, hopefully different kinds of people, we gain so much more knowledge which can really change your mind about certain subjects. I watched a video you made maybe years ago about disability in movies and how many villains are in some way disabled, scars etc. I had never thought about that and it really made me realize that we sometimes demonize people for looking different from the typical "ideal". So on this my view point has really changed. I used to hate people that made substitutions in restaurants because I felt like it was being rude and then I developed several health conditions so now I am that person. I need substitutions and I feel really foolish for judging people in my past when I didn't know their story. Be gentle on yourself.

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  45. Liz86000 Post author

    You are an inspiration indeed, thank you for sharing that with us. All my love Jen. Kisses from France.

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  46. DieOrWrite Post author

    Thank you for this video. It's almost impossible for me to comprehend how someone can go through as much as you do yet still be able to talk so openly about your struggles. It is so inspiring to see you sharing something so personal.

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  47. Alison MacConnell Post author

    Thank you for sharing this with us, Jen. I think it will be really helpful for others who are struggling with this. xx

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  48. Zoe Deal Post author

    Thank you so much for creating this video. This is something I agonise over, I have multiple sclerosis and most of the time pass for an able bodied person. I am fully independent, I don't require a carer or a wheelchair so I would never put myself in the disability "box" because like you I felt like I was taking away from people I considered more disabled. But as I've lived with my MS I've learned more and more about myself and my invisible disability. I am a disabled person. When I have a relapse we call them disabling events. Because sometimes I can't walk and sometimes I can't see. It's really hard to explain this to others who don't experience disability in any of its forms.

    I relate strongly with the feeling of burdening and boring people with my condition. You just stop talking about it. I tell people I'm fine when I'm not, just because I can not bring myself to talk about not being able to go down stairs. I guess I just wanted to say thank you for being so open and helping me as well.

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  49. moon book Post author

    Disabilities & me reltship is werid, for me (what you said in 6:03 I seem an abule body) I have an abule body but I do have disabilities (some people thinking that I may have mantel health). I have ADHD with other stuff ,Sometimes I want to be free without using my medication (I have one) even my friends don't understand ,they're want to understand it "why I have to take this medication even that I finish school" and it harder for me to explain why I need to have it ,& also some of my friends try to take this medication and it didn't work for them, and it is okay, but the worst thing is some people thinking that the medication is a drugs or make jokes that I hurting , I also ounce told that I paid for ADHD and made some of My friends scared to take this medication because of that. I realize that this medication make my life easier so I take it when I have driving lesson, in social events and activies. But the most funny things that can happen to you is when someone or your friends exspin to you what the issue they have and you know exactly what they meant because you have it as well so you made resize that they are fine.

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  50. Amy Bray Post author

    I can’t believe the way you’ve been treated by people, I have so much respect for you. Really, you should only have to make your book review videos and not have to talk about your personal life. Although as hard as these videos must be to make, they open our eyes to what people have to go through day to day & how they can treated by others. You Tube is full of these perfect people with their perfect routines. Oddly enough I’ve just watch one before this, and she was drinking lemon water & doing yoga. This video was so refreshing to watch. People can be so ignorant and it sounds like the train lady may have had her own issues. Your a beautiful person with a kind heart ❤️ and Internet land needs more people like you.

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  51. NoFaceInTheCrowd Post author

    Thank you for being brave enough to have an honest conversation about this! As someone who cannot imagine what you must be going through, it's so important to have people like you talk about their experiences. You are not only helping people like yourself by talking about this, but everybody who cares enough to listen too!

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  52. Emily Forbes-Criddle Post author

    I know it might have been difficult to film this video but I just want to thank you for having the courage to put your feelings and this discussion out there. I have very similar feelings about myself, although not with a condition similar to you. I’m autistic and it’s a constant internal struggle between “I’m just the same as any other person” to “these difficulties are the reality of my life.” From looking directly at me I can pass for being able bodied, and for the most part physically I am, but then there’s instances where I’m unable to move, to speak or even know how to look after myself. I had a PIP review recently and had to have assistance with the application and described how I feel like I’m a fraud, but that’s again how society sees difference, and why you sharing your truth is so important.
    I feel like this wasn’t very coherent but I always watch your videos and you’ve helped me learn that I actually want to start reading again as I loved it so much (case in point I have a massive pile of books based on your recommendations, yet haven’t picked up yet bc I can’t even read the first sentence lol)
    Hope you’re feeling ok today and looking forward to seeing the rest of the flat changes xx

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  53. Marian Ryan Post author

    Thank you for sharing your thought process and articulating so many underrecognized aspects of living with disability and chronic illness. I can identify with many of your psychological and emotional struggles and have parallel experiences in daily life. Your video reminded me to an extent of a blog post by the novelist Nicola Griffith, "Coming Out as a Cripple," where she talks about having MS over a long period of time and how her thinking about her condition and herself has changed as the disease has continually changed her lived experience. I have sometimes uselessly wished for a static condition, where the effects and limitations remain the same, as I find it rather daunting to have to continually readjust what I do every day and how I live. Big thanks for this chat.

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  54. Francesca Hughes Post author

    As someone with Cerebral Palsy, although my lived experiences are different as a wheelchair user. However, I relate to the need to achieve and be productive in an able-bodied world, despite fatigue. Although I somewhat accept my CP, I need to work on knowing when to stop.

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  55. Natasha Fielden Post author

    Thank you so much for sharing all of this with us, Jen, and I'm so sorry that you have to encounter so many thoughtless and sometimes downright rude/cruel people in your every day life. On a separate note, I was really struck by what you said about when we don't talk about the day-to-day lived experience of having a condition, the gap between us and people's understanding of us widens. You articulated that so well and it's something I've struggled to do when communicating with people about my mental health over the years. Like you say, being the person living something is often very boring, so we understandably veer away from boring others too (or perhaps concerning/worrying them) but I've realised that it really does put up boundaries when I don't try to communicate with at least friends and family about my day to day experiences (although I still find it excruciating at times). Thank you again for "showing your working" on this, it's clear from reading the comments here just how thought provoking and helpful it has been to many of us. xx

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  56. Jocelyn Gordon Post author

    Thank you for being so open and vulnerable with all of us. ❤️

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  57. Helen Hillman Post author

    Hi Jen,
    I’ve always loved your Channel and videos on disfigurement and disability, partly because I’m a disability history/history of the body nerd and partly because I have a chronic mental/physical illness combo (sensory perception disorder and therefore sensory motor ocd among a myriad of other wonderful things…). Anyway just wanted to thank you for making this video. I’m wrangling with this idea of self identity and disability too and always feeling guilty if I identify as such. I’ve also always wanted to ‘pass’ and people are always surprised to hear the lengths I have to go to on a daily basis to be comfortable enough to function (which are, as you said, boring!). Recently, I got my first job as a teacher an I’ve had to have a couple of days off due to my condition- something I never wanted to happen and which made me feel like a failure. My therapy homework is to write myself a letter about how shitty it is so that I actually process my experience and also am more self compassionate. Anyway the point is that I’ve been avoiding doing that and this video has given me the motivation to open up to myself (and others) and be compassionate towards myself. I think you’re amazing and just wanted to thank you again.
    Ps. I have to modify the way I dress to cope with sensory issues and seeing you embracing hats and scarves and making it your own has been a real help.

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  58. Saddal Diab Post author

    I think this was particularly brave and courageous of you. Im quite blown away by your talent and humanity. Everytime I watch a haul of weekly vlog , I end up with countless ways of how I would like to be as insightful and perceptive as you. After watching this video my respect has reached an entirely new level. sending loads of cyber hugs your way!

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  59. Ingert Svärd Post author

    Thank you for sharing Jen. It just astounds me how rude many people are. I have a son on the autism spectrum, so he and I get our share of rudeness. I do not understand why we can't accept differences; that is what makes life intrestting. If we all were the same, nothing exciting would come out of this world. I am so glad that you are strong enough to share your story, and I know it will help many people. Thank you!

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  60. Katherine Allen Post author

    Thanks for sharing! I'm a disability coordinator at a university and it's so helpful hearing about different disabilities since people can default assume the only disabilities are mobility and visible.

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  61. Imke Gobel Post author

    You are so lovely Jen. You are such a kind and insightfull person. And I totally agree, sharing your thoughts, not your conclusions, is just as powerfull.

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  62. Dollyscrumptious Post author

    Hi Jen – I don't know if this will be helpful to you? (I'm sure your eye drs would've told you about this if it would help you.) I had laser eye surgery 12 years ago which left me with very dry eyes. I have to use eye ointment every night to stop my eyes drying out during the night. I used to use Lacrilube eye oint. but that isn't available currently so I now use 'Xailin night' eye ointment which you can buy from Boots or any pharmacy. Like I say I would hope your drs would've told you if this would be an option for you but I know how painful dry eyes are and thought I'd share just in case. Hugs to you. xxx

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  63. Gwen P Post author

    You are brave beyond measure, Jen ✨ It may not seem like a lot, but you being vulnerable and sharing the way you did in this video made me feel so humble! ✨ I do admire your strength and your talent; you are such a gifted writer and content creator!! Thank you for being “you”. Because you are beautiful! Sending you lots of love! 😘

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  64. Curious Reader Post author

    Wonderful and brave discussion! I recognise some of this with my experience of anxiety, I have so many particular habits and routines I do in order to feel calm that I don't regularly talk about but sometimes just sharing those things helps people understand why I can't do things a certain way that they feel is entirely normal which I've often found helps them be more understanding.

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  65. Anna Goldberg Post author

    Thank you so much for sharing this video. I relate so much to your saying that everyday life with a disability can be quite boring–I experience that as well, punctuated by some moments of frustration or panic! <3 you always

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  66. sara richards Post author

    Having chronic conditions is so boring. You are absolutely right and that’s how I feel. I’ve had Neuropathy for nearly 30 years and with that Fibro and Sjögren’s syndrome. I look well. I look fine but inside I am so fed up with having to deal with pain. My eyes are bad now as well but nothing like yours. I think your attitude to life and disability is remarkable, and the fact you are so creative in spite of everything is wonderful. My best therapy is distraction but keeping going can be difficult.
    I have never ticked the disability box either. Keep going, you are an inspiration. 💕

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  67. karen ginther Post author

    I hate it when people ask "what I do in a day." Like… I take care of myself constantly because if I'm not managing my healthy 24/7 I will get sicker. I have people that tell me to take this and not this or distance themselves because they find me gross because I'm sick. Wasn't able to go to school full time.I stopped having sleepovers when I was younger because of the way I had to prepare myself for bed incase I got sick or had a flare. And I've lost friends because of that. I don't like being hugged, clapping, holding hands. Touch really hurts. I'm constantly in the ER because I get infections easily or a cyst has ruptured, or whatever could go wrong goes wrong.
    The only thing my family shares about me is my health not any of my accomplishments or interests. Don't let a person just become their health. Anyone watching this video probably knows that.

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  68. Adrienne Stapleton Post author

    Thank you for sharing your story. Must say that I did not find your story boring in the least but was in many ways captivated by it. I've enjoyed watching your videos for quite some time now, and I never imagined that the time between those videos presented these challenges. Was just talking this morning to someone whose disability is in some ways invisible and how neglected she feels when people forget to provide her with the extra assistance she has asked for.

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  69. Jenny Loves Books Post author

    Thank you for sharing, I'm grateful for your openness. ❤🧡💛💚💙💜

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  70. curious hmm Post author

    thank-you jen. as a side benefit of your video you've given me inspiration and courage to face the new challenges i'm experiencing from arthritic knees that decided to stop fooling around and get serious about inflicting pain and limitations!

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  71. Lilly McNocann Post author

    Thank you for sharing this with us, this is both very brave and generous, and very, very helpful ❤

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  72. Ula Ko Post author

    Jen! You are amazing, perfect for me. And you are (my God!) very strong, very strong woman. love from Poland

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  73. IndigoImmy Post author

    This is something that I have thought about more recently as I have EDS which is on a massive sliding scale but recently I dislocated my knee really badly and the reality hit that this is something I could be dealing with a lot in the future. The part about the reality of day to day life is so true you don't want to talk about it the small things that make life harder than they are for other people.

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  74. Manika Wangata Post author

    I am going to say unoriginal stuff but I want to say them nonetheless. Thank you for putting yourself out there, out here. I am sorry you need to share that stuff for us to understand (meaning that we don't easily have access otherwise) but I am grateful that you have a platform where you can share it and also to help us understand better or just see what your daily life is like with your condition. Thank you for making it easier for us and I am deeply sorry that you have live it on a daily basis.
    Thank for your humanity, your sense of humour and your love of others despite the shit you must through on a daily basis.
    Thank you.

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  75. Drinking By My Shelf Post author

    Thanks for sharing this Jen 😘 it’s always interesting to see our thoughts evolve over time on various topics, particularly how our thoughts evolve about ourselves!

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  76. Laura Reads Pages Post author

    Thank you for sharing videos like this one. I enjoy hearing you perspective 🙂

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  77. Laela Benatti Post author

    Dear Jen, l hope you read what l wrote but l don' t know.🥺

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  78. Sandra Reiss Post author

    Jen, like others I thank you so much for this video. I think the vast majority of us had no idea of your "struggle" to get going each day or that a hiking holiday could become painful.
    I had so many thoughts going into this as I am an employment attorney in the US and handled almost stictly Americans with Disabilities Act cases for seven years after the law was enacted to develop the law. In the States you would considered protected by the law for employment considerations and would be in big group as the law covers those who must take medication to control long term illnesses that are not "visible".
    I was wondering since your condition is so rare are the doctors keeping records based on your trearment for others? Have you considered writing about the instances of micro and macro aggression that you and others experience? Or filming a documentary of sorts on the same?
    I know what people suffer in the workplace but your experiences and the things people scream in public need to be exposed…..not that thats your responsibility but you have such a gift in writing and sharing and comminicating…💕

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  79. Örn Leifsson Post author

    Thanks for this very interesting video – I totally get that you have not been willing to share some of those stories before, cause body sorrows (búk sorgir – as we say in Iceland) are private and can be boring both to talk about and to listen to, but still, it's extremely important for everybody to be aware of these things and what I found most interesting is the fact that you are facing up to your own illusions about yourself cause I think most of us have many illusions that we are not willing to face both about our bodies and our personalities. So your chat here was very thought provoking.

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  80. That one Awkward NOODLE Post author

    I never noticed your hands until you mentioned it, and I’ve been watching your videos for a long time.

    Reply
  81. Very Amazing Grace Post author

    You definitely can't do everything I can do. You can do a LOT more. I'd never be able to do anything like playing piano or writing books. I really envy people with artistic talent like that 🙂

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  82. Janell Thomson Post author

    Thank you for your openness and generosity in sharing your story and being vulnerable on the internet. You are an inspiration and I love watching all of your videos. I came for the books, but I stay for all of the Jen-related content! <3

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  83. Carey Post author

    Jen, you have touched me with your honesty and openness . Thank you. I have no doubt you have touched others as well.

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  84. FlyBiReads Post author

    As someone with fibromyalgia/chronic pain, I feel some of this quite a lot. I appreciate this discussion, especially hiding/not-hiding parts of ourselves. I find it very helpful to talk to others who fall into similar camps. If you want to have a private discussion about some of this stuff, I’m sure you have other people to talk to, but let me know.

    Reply
  85. Face To Face With Shell Post author

    You are awesome…thanks for sharing and bringing awareness.

    Reply

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