Hey guys.
Today's video is going to be another Disability Discourse, and before we get into it I just
have a couple of quick things to say.
Today my hip is really sore, so if you guys see me looking uncomfortable or shifting around
a bit more than usual, that's why.
And also because of that I'm actually going to do this video a bit differently, I'm going
to split it up into four different parts.
Um, normally I just like to chat with you guys for like fifteen minutes or so and kind
of let the conversation flow.
Unfortunately I have a bit of brain fog going on from the pain, and I feel like you guys
really wouldn't get the best quality content from me (not that my content is the best quality
normally, but it would be even worse) if I just sat here and talked at you for fifteen
minutes when my brain is like not working, 'cause I would forget what I was saying, I
would forget all the topics, and I would just be like "hmmm" for like fifty percent of that
time.
So I'm going to split this up into four parts, hopefully the next Disability Discourse will
be able to be more chatty and like casual like I like to make them, but for now this
is how we're gonna do it.
So, onto today's topic.
Today's topic is guilt and taking responsibility for people with disabilities and chronic illnesses.
I think this is a really important topic to talk about, because while there are a billion
things that you shouldn't feel guilty for within your disability that you're often made
to feel guilty for, whether that's by society, by friends and family, by doctors, or so often
by yourself, um, there are also things that you do need to take responsibility for.
So today I want to talk about both of those things, and kind of not only what you shouldn't
feel guilty for and what you should take responsibility for, but also how to do both of those things.
Or at least, in my experience, some things that help with both of those things.
So of course I can only talk about my own experience with this stuff, so I am not going
to cover every topic in this area because I don't feel qualified to do that, so I'm
just gonna talk about what I personally have experienced with guilt and taking responsibility
and what's helped me to kind of better differentiate both of those things and how I try to take
more responsibility for what I should be responsible for.
So, without further ado, let's get into it!
So I'm gonna start with the guilt side of things first, because I think that's a little
bit easier for me to talk about than the taking responsibility side, and it also has like
a lot of negative things in it and I think we should get that out of the way first.
So things that you shouldn't feel guilty for in your disability or illness is...basically
anything that you can't control.
You shouldn't feel guilty that you can't do things sometimes, you shouldn't feel guilty
if you can't have a job or study or work full-time, or even at all.
You shouldn't feel guilty for these things.
I think the most important thing to remember about this side of things is you didn't choose
this.
You didn't choose to have an illness or a disability.
You're just as much a victim of the things that have been taken away from you as anyone
else is.
You're a victim of the things that your disability took from you, just like you think other people
are victims of it.
So you didn't choose to be this way, you didn't choose for your life to go like this, and
in fact, so many disabled people had other plans for our lives, and those just didn't
work out because of our disabilities, or sometimes they do work out despite your disability or
because of your disability.
But I guess what I'm trying to say is: Try your best not to feel guilty for things that
you can't control and for something that you never asked for.
I know that's a lot easier said than done, because there's so much stigma around being
a "contributing member of society", whatever that is supposed to mean, and so much stigma
around things like independence and living an independent life and things like that that
are so often not possible for disabled people, and so it's really really tough to take yourself
out of that and say "no, this is not something that I should feel bad about, this is not
something that I should feel guilty for".
You also shouldn't feel guilty when people offer their help and give you their time and
energy, because that's their choice as well.
They did choose that, see?
So you didn't choose to be disabled, and it's okay to need help and it's okay to not be
able to do things that abled people can do.
That's natural - it's a DISabiliy, there are gonna be things that you cannot do, right?
So that's the...I think the really simple version of this guilt part, and there's something
else that I wanted to touch on as well, because one of the things that I have struggled the
most with feeling guilty about and I think is really tough for people with especially
invisible illnesses or disabilities is this concept of "faking it".
So I don't know about anyone else who's watching this with invisible disabilities, but the
number of times that I have been accused of faking having arthritis for whatever bizarre
reasons, is just off the charts.
And it hurts every time.
Like, it gets a bit easier as you get more used to it, but it really does hurt every
time.
Um, the most profound - not profound, that's a little bit far - but the most helpful thing
anyone ever told me that has really changed my mindset about this, is someone once said
to me "If you're wondering if you're faking something, you're not.".
Because faking something implies a level of conscious trickery, conscious...like, a conscious
desire to trick people into thinking that you are sick, or more sick than you are.
So if you're sitting there thinking "gosh, what if I'm faking this?
What if I'm just a terrible person and I'm just faking this somehow?", then clearly you're
not, because if you have to wonder than then you're not doing it.
There's like no more discussion about it, you're not faking it.
And I know it sounds...to someone who doesn't have those thoughts and doesn't have to wonder
if they're faking something or not, that probably sounds ridiculous, right?
It probably sounds like, well, you'd know, right?
You should know if you're faking something.
But I think the whole world tells you what a disability should look like or should be
like or what you as a disabled person should be able or unable to do or how you should
behave, and if you don't behave in exactly those ways, it's so easy to fall into this
trap of thinking "I must not have a disability.
Like I have a diagnosis or I have all these symptoms or I take all these medications or
um, I see a specialist, but I must not have a disability because this isn't how disability
looks or works or feels", like it's so easy to fall into that trap and I think, like I
said, the most valuable thing that I've heard is "if you're wondering whether you're faking
it, you're not faking it".
So I really hope that helps some of you as much as it really helped me because I go back
to that saying a lot for myself whenever I'm thinking "oh gosh, I should just try harder
and I could, like I could behave more like an abled person, or I'd be able to do more
stuff if I just tried a little bit harder, if I just pushed myself a little bit harder".
And I think that's the most dangerous thing about guilt, right?
This toxic cycle that you can so easily get into of "I just need to push myself a little
bit harder and then I'll be able to do all the things that people think I should be able
to do, that I think I should be able to do, that I wish I could do.
I just need to push myself a little bit harder", and then you push yourself harder, you get
sicker, whether physically or emotionally or mentally, and then you crash and you can
do even less than before.
So it's a really vicious cycle and it's so so important to take care of your own health
first and foremost and to say "no, I can't do this thing", and that's okay.
So yeah, that's the guilt side of things.
I know this was really brief and quite broad.
I wanted to keep this as broad as possible because there are so many different things
that people with different illnesses and disabilities will feel guilty about and I can only really
talk about mine, so I wanted to talk about mine in like a broad context where hopefully
it can help you as well if you're feeling these terrible and inaccurate feelings.
So we're into the responsibility section now, and I really want to focus this discussion
on two specific responsibilities that I think we as disabled or ill people should take for
ourselves and for the people around us.
Um, so these are two things that I've definitely had experience with and the two things that
I feel most qualified to talk about, and also the two things I feel that I've been most
successful in mitigating and kind of...taking responsibility for.
So first I want to talk about the pain grumps.
So I think anyone who has chronic pain or a fairly constant pain that happens from time
to time knows that pain can make you a really different person.
It can make you say things you don't mean, it can make you snappy, grumpy, it can make
you kinda nasty to be around.
Like if you're not careful with it, it can really mess with things.
So this is something that you do need to take responsibility for.
Obviously it's your behaviour, regardless of whether it's made by pain or not, it's
your behaviour and it's going to affect other people and you need to take responsibility
for that.
Now I've found a couple of ways of dealing with this, and the first is to warn people.
So I always warn the people that are around me if I'm having a bad pain day or if I can
feel myself like slipping into that kind of grumpy grouchy mindset that constant pain
or lack of sleep can put you in.
I always warn people around me, and this helps in two ways I've found.
I've found it actually stops me from snapping in the first place, because I've forced myself
to vocalise it, it makes me more aware that i'm likely to do it and therefore I don't
even do it in the first place.
And the other way that it helps is that it means that the people around you are likely
to be a little more gentle with you because they know what's going on, right?
Like you've explained it to them, you've said "hey listen, I'm having a really bad day,
and if I snap at you it's nothing to do with you, it's everything to do with me, I'm just
in a lot of pain and it's making me grumpy and I'm really sorry".
Like that's all it takes for people to understand and be like a little less harsh with you,
perhaps treat you a little tiny bit nicer, and that like really really helps.
And often I find that this just mitigates the whole thing entirely, like I said, it
means that I don't snap because I myself am hyper aware of the fact that I'm likely to
or I'm liable to, and therefore I don't, and other people with be just that smidgen gentler
with me and that helps me to not snap at them as well.
The other thing about this of course is that then in you do snap at someone, you have prewarned
them and they can try and not take that to heart so much because you've said "it's not
about you, it's about me".
Um, which I think, by the way, when I prewarn people, that's in my little "script" that
I use for prewarning, is saying that it's nothing to do with them, it's not their fault
and they haven't done anything wrong.
I think that's one of the most important things to say in your little script when you make
it up.
Um, so yeah, that's my first mitigation technique for that one.
My second is a little more difficult, it takes quite a lot of time, and that is just knowing
yourself and knowing your warning signs for when you're likely to behave this way.
Um, I think this is really tough because obviously when you're in a lot of pain and your brain
isn't working properly, it's even harder to recognise when you might be likely to snap
or when you're being...um, like when you're reacting in a way that isn't reasonable for
the situation.
Um, so this is a tough one, but I think just try really hard to...recognise when you're
getting into that mindset and think what are some telltale signs, like what are my telltale
signs?
Like for me, if I'm feeling grumpy all the time, like if there's a low level grump all
the time, I know that I'm likely to move from that to a high level grump in like no time
at all.
So learn your warning signs and then warn people about those warning signs, and be like
"hey listen, really sorry, and don't take it personally please, like I'm very sorry".
Of course, if you do snap at someone like I said, hopefully they will take it a little
bit better and give you a little bit of leeway because you've warned them, but also come
back later and apologise properly for whatever you did or said.
Um...and the last thing about this is...oh no...oh noooo pain fog.
Okay, let me just check my notes!
Okay, I checked my notes for the first time ever in a Disability Discourse video, and
my last point was that you can try another technique as well, which is to ask yourself
"would I react this way on a low pain day?", like before you react harshly to something,
just take a step back and be like "is this a reasonable reaction to what's happened here?
Is this a reasonable level of upsetness or anger that I'm feeling?
And would I have reacted like this if I wasn't in a lot of pain?".
This is super difficult to do, and honestly I still have a really hard time with this
one, because when your emotions are running high you always think that it's completely
reasonable, you're like "no, I'm angry because it's reasonable to be angry and I'm upset
because you upset me!", but in reality often that's not the case.
So yeah, don't beat yourself up if this one is really tough, it IS really tough, like
human emotions are really really really hard to like step back from a lot of the time,
which is why we so often have fights and get upset over things that aren't necessarily
rational.
Um, but yeah, this is something you can try, and you can train yourself to get better at
it.
I've got a lot better at it from when I started, but I'm still not great.
The second thing I wanted to talk about in the taking responsibility category is carer's
fatigue.
So this is super super common when any person is caring for someone else in a non-professional
capacity, they are likely to burnout if it's something that they're doing all the time
and if they're not trained for it, and especially if they're juggling it with other things,
and if the person they're caring for is, as I said, in a non-professional capacity, where
it's like a partner or a friend or a family member.
Like carer's fatigue is very very real and it's something that we as people who may need
carers need to look out for.
So some of the classic warning signs of carer's fatigue are a lack of interest in things that
they used to really like, um, they can be snappy or irritable about things that normally
wouldn't make them that way, lethargic, just basically depression signs are often the signs
of carer's fatigue, and it's a really common thing that I don't think gets addressed enough.
What I want to say about this is that it's not your fault that you need care at all.
Like that's one of the things in the category of things that you shouldn't feel guilty about,
right?
However, it is your responsibility to help your carer like they've helped you, and help
them to practice self care and to take a break once in a while.
And I think the most important thing in this part is to open up the dialogue, and to say
like "hey, listen, if you're ever feeling like a day off, or even like a week to just
go somewhere, like we can sort it out somehow, we'll make it work", and just say "I understand
that it's not about me, you're not angry with me or sick of me, it's just that you need
a break, you need some self care.
Everyone does.".
And I think often carers feel...obligated to not say things like that, because they
think that it's mean or that it's their responsibility to take care of us and so they can't say that
they're feeling worn down or exhausted or depressed and they just need some time off.
Like that must be a really hard thing to say, so I think part of our responsibility as the
caree, as it were, is to say "hey, I want you to tell me.
I want you to tell me if you're feeling like you need help, if you're feeling like you
need support", because it's just as important, right?
Like both of our mutual health is dependent on eachother, and so we both need to make
sure that the other one is doing as well as possible.
And in whatever ways that you guys can sort that our, whether that's they need to have
the house to themselves for a day every couple of weeks, or whether that's they want to go
out to dinner and a movie just by themselves or with friends every week or something like
that, just try and figure out a way that makes both of you happy and will keep both of your
like emotional energies up, because carer's fatigue is like very real and something that
really doesn't get talked about very much at all, or at least not in my experience.
And so often the only time you hear about carer's fatigue is when it's a huge blow up,
and people say things they don't mean, or like even the care's mental health ends up
being permanently damaged or at least semi-permanently damaged from this complete burnout because
there was no open dialogue, there was no way that they felt they could express themselves.
So I think , like I said, as the disabled person it is our responsibility to open that
dialogue and to make sure we're having this honest communication about how both of us
are feeling and what is a good way for us to keep this relationship healthy and make
sure that we're both doing well.
So yeah, care's fatigue, that's a thing that I guess I didn't think I'd be talking about
on the internet, but there you go.
It's more common than you would think and in fact I would hazard a guess that pretty
much everyone who cares for someone in a non-professional capacity for many hours a day long term, I
would hazard a guess that most of them suffer from some degree of carer's fatigue at some
point, so it's really important to try and, um...it's not a taboo thing, it's also not
a bad thing to feel this way, it's perfectly normal to feel this way, and it's nothing
against you the disabled person, it's nothing against the carer, it's just something that
happens because it's a tough job to care for someone 24/7 who you love, like it's hard.
We get that, and it's important that we let our carers know that we get that.
Okay, so that is it for my talk about guilt and responsibility when being disabled or
chronically ill.
I really hope that this has been informative or helpful to you in some way.
I know it was a little bi different from my usual Disability Discourses, so if you preferred
this way, let me know, and I'll keep doing things in this more cut-up, formal style,
and if not I hope that soon I can go back to that more conversational, chatty style.
As always, I know I only talked about my own experience in this video and that can be pretty
narrow, so please, if you have any thoughts or experiences of your own, just add them
down below.
I always always always love to hear about your thoughts and feelings on things like
this, because as I said, my own experience is not universal at all.
So, I hope that you liked it and I will talk to you next time.
Bye!
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