January 24, 2024 • 18 mins
Join us as we learn about behaviour as communication in care with Victoria Bartle. Find out more about the conversation below, and subscribe for more interesting conversations in care, health, early years and education. We'll be back with a whole new episode on Wednesday 7 February.
This journey into Victoria's day-to-day provides a comprehensive insight into understanding and interpreting the delicate balance in care-receiving and care-giving situations. From tackling discrimination at work to understanding the vital role of non-verbal communication in care settings, Victoria's journey helps us to understand our impact in the professional, social, and personal sphere.
Uncover the physical and emotional issues surrounding people's experiences of disability as Victoria covers the holistic impact of her everyday hurdles.
Learn from her experiences dealing with the complexities of the healthcare and social systems to explore a fresh perspective on the emotional backdrop and behaviours exhibited by people receiving care to help build effective care strategies rooted in humanity and empathy.
As Victoria shares the raw reality of balancing her desire for control and the necessity to rely on others, she offers precious insights for carers to enhance their technique, forming a beneficial relationship based on clear boundaries, mutual respect, and good communication. Listen in and gain a deeper understanding of the need for excellent communication skills and self-awareness in care-giving encounters.
Want to hear more from Victoria?
Find her on the CACHE Alumni website, her LinkedIn page, via her work with Newcastle University or on her website.
If you'd like to see this podcast as a live video, you can see Victoria and her slides on the (members only) events and video learning page of the CACHE Alumni website, alongside lots of other great CPD.
If you enjoyed this podcast, please share it with your colleagues and remember to like, subscribe and leave us a review.
Visit cachealumni.org.uk to join 24,000 members from across care, health, early years and education. Membership starts at free, and you'll gain access to our member magazine, events, resources and a member discount and benefits scheme.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Music.
(00:05):
Hi, my name's Victoria Bartle. I'm a contributor for the alumni website,
so you might have read some of my articles about living with multiple health
conditions, which impact both my mental and physical health.
I've personally employed carers in the past when I needed more support and I
still do get help with certain tasks by having a cleaner,
(00:27):
a gardener and a hairdresser to do the physical jobs that would use all of my
energy restricting me from doing other things like cooking for myself,
seeing friends and family and speaking at things like this.
So this video is about behaviours, the non-verbal communications that they impart
and how you can best interpret,
adapt and learn from the behaviours that your clients are exhibiting to provide
(00:52):
better, more individualised care.
We all behave differently in different situations. We all have things that we
find difficult to deal with and scenarios that make us uncomfortable.
Social anxiety, fear of public speaking, having a meeting with your boss,
all of these situations will make each of us react differently and exhibit different
behaviours depending on our own previous experiences and personalities. personalities.
(01:15):
In a care situation, I believe that by focusing solely on what the client is
telling you will only get you a small part of the story.
You won't learn who they are, what they need or how they're feeling about the
care through spoken communication alone.
You need to be able to read their body language as well as putting yourself
in their shoes and seeing the situation from a different point of view.
(01:37):
But being able to do this is a skill and like all skills, practice will help you improve.
So today I'm going to give you an insight into my personal experiences of receiving
care, how it affected me, the behaviours I exhibited, where they came from and
how the carers that worked with me dealt with it.
So hopefully this information will help you to see things from a different perspective
(01:58):
and help give you some ideas on how best to react and adapt your own behaviour
to develop the rapport, level of communication and ultimately satisfaction with
the care that you're giving.
So I became disabled over a number of years.
It was a slow process of increasingly impactful symptoms that limited and restricted
my ability to work, take part in social events and look after myself.
(02:22):
This meant that I did have some time to adapt to my ever-changing limitations
but it was still a shock when I realised that I couldn't manage to look after
myself completely independently anymore and that I was going to have to get some care.
Having to stop working, claim benefits and reassess my plans and expectations
for my life was a big change and one that I wasn't ready for.
(02:45):
I found myself fighting everyone.
Reducing my hours at work and then taking redundancy was fraught with issues
and I even went to a tribunal for disability discrimination due to my treatment
at work and claiming benefits is just a horrible experience which is time-consuming,
exhausting and humiliating at every term.
(03:05):
Again, I had to go to a tribunal to ensure that I had the right level of support.
And then accessing the social care system is another minefield.
You've got financial assessments, visits to assess your home,
different departments for every single aspect that you need to manage and coordinate yourself.
And it all added to the stress that I was experiencing at the time.
(03:28):
And throughout all of this change, I still had to keep up my medical appointments
with quite a few different specialists and clinics because I've got multiple conditions.
So physically looking after myself by cooking, cleaning, washing,
doing shopping and laundry, etc.
Just like the normal day-to-day stuff, they were often pushed to the back of the list.
(03:49):
And all of this stress, all of the challenges, the constant fighting for the
right help and support left me exhausted, very defensive,
irritated by the numerous systems that I had to interact with,
and just generally disillusioned with the idea of anyone being able to help
me without it causing me more problems.
Looking back now, I feel a little sorry for the care companies that I contacted
(04:10):
them, as they were faced with a person clearly unable to manage,
in desperate need of help but completely overwhelmed by everything that I've
been through over the past year or so.
My default reaction to emotion is to cry.
If I'm happy, sad, stressed, anxious, every emotional response from me includes
tears and the amount that I cried during these initial phone calls and interviews
(04:34):
must have been so difficult to deal with.
I was really at my lowest point when I had to employ carers.
I felt like a failure, that my my life was over, that I was a burden to society
and just a waste of space.
And when I think about friends of mine who've had to employ carers,
they've done so at a similar stage.
When you've reached the end of what you can personally cope with and accept that you need help.
(04:56):
And I can only speak to my experience of acquiring a disability and things are
obviously going to be different for people who've had carers all of their lives.
But from my experience, I was already struggling mentally with the idea of having
to have care but also realistic about the need for it.
This was also my first experience of anyone looking after me.
(05:17):
As a single woman in my 40s I had an individual experience of receiving care
which was impacted by my thoughts and feelings towards being disabled,
not being able to work, claiming benefits and having to rely on other people
to do things things for me.
My preconceived ideas of a person receiving care was someone who had had a disability
(05:37):
from childhood, an older person declining in health or someone getting respite
care after an operation or injury.
I did not see myself in any of these groups. When I started receiving care I
was 40 years old, lived alone and was used to working in a challenging job that
needed me to be be effective and also manage other people to achieve their targets.
(05:59):
I also looked fine.
I've got invisible conditions and it's only when I'm out and about using walking
aids that my disabilities are visible to people, which creates its own set of
worries about judgments and stereotypes.
I was receiving care in my own home, was relatively young and asking people
to do my washing up, chop food and prepare meals, tidy up and do my laundry
(06:21):
and this felt utterly ridiculous to me.
I didn't want the carers to think that as well I definitely didn't want to be
judged looked down on pitied so I behaved in ways that I thought would minimize that from happening,
When I was interviewing care companies and deciding which ones to choose,
I asked them lots of questions about the type of clients that they already looked after.
(06:43):
I wanted to make sure that I had carers who were used to interacting with people
my age who had acquired disabilities.
I wanted carers who understood invisible disabilities and chronic pain and fatigue
conditions, even though they're often misunderstood within the medical community.
I didn't want to have to explain and justify myself to every carer who worked
(07:04):
with me. although I did do this anyway as I was so insecure and worried about
their perceptions of me but in an ideal world I wouldn't have had to.
So when I'm in a situation where I'm unable to contribute,
can't do things or I'm limited by my health conditions then I'm immediately
uncomfortable and my reaction to this is to overshare,
(07:25):
to educate and make myself feel that the other person understands the reality
of my life and isn't making assumptions about me.
I'll go over the top in being happy about my health, making jokes,
being loud and generally showing how competent and able I am to make my own
decisions and enjoy my life with my disabilities.
I'd also drop comments in a conversation about my previous jobs so that the
(07:48):
carers would know that I used to work.
I'd mention doctors and clinic appointments, treatment plans and any alternative
therapies that I was trying to help them to see the reality of my conditions.
I'd tell them about the consequences of doing the washing up myself or hanging
out my own and laundry so that they wouldn't judge me for asking them to do such basic jobs.
I'd also stay in my pyjamas for their calls so that they could see that I wasn't
(08:12):
able to manage getting dressed that day.
And I'd physically emphasise my struggles moving around the house.
I'd be wincing in pain and holding on to walls and furniture more than I probably
needed to, because I felt that I needed to create a visual for them to see and
understand that I really was ill and needed the help that I was asking for.
(08:32):
I was trying to convey that I was embarrassed about without having to receive
care, that I wasn't faking, that my conditions were real and had a massive impact
on my life, even though the carers couldn't physically see anything.
The carers that I had were all very understanding.
When I mentioned my conditions, they generally knew somebody who had similar
ones or even shared their own experiences with me, which made me feel more comfortable.
(08:56):
I felt as if they'd understand me better if they knew other people like me,
and it made me feel less worried about their view of me and more relaxed about
me asking them to bring me a cup of tea or fill my hot water bottle up.
But I was also quite directive in my interactions with them.
I was used to managing teams and had decided that if I thought of the carers,
(09:17):
my cleaner, my hairdresser as staff who are doing a job and that job is to help
me manage my life, then I could cope with it a bit more easily.
I would tell them exactly how to hang my washing out, how I I liked fruit and
veg chopped and I would sit and watch them as they worked.
This could have been seen as demanding, picky and unrealistic,
but I felt like I was paying for service.
(09:40):
So I was going to have people do things the way I wanted them done.
And this all came from my working background and was definitely a coping mechanism
that I used to justify having carers without constantly worrying about the negative
connotations of being reliant on other people.
I felt that as long as I was organising my own care, paying for it myself,
managing the team that I had and directing my work, then I was still independent.
(10:05):
I was still in control of my own life and I wasn't a burden to anyone.
I really hope that my bossiness and oversharing was seen as insecurity and not just being awkward.
I'd hate to think that I was one of those clients that carers would avoid working
with, but I can see that my behaviour could have been seen like that.
I was demanding that I got easily frustrated and I even requested that a couple
(10:29):
of carers didn't come back to work with me as I wasn't happy with how they did things.
But this all stemmed from my own issues around my health deteriorating.
I was having to reassess my entire life, come to terms with physical restrictions
and make huge changes to the way that I lived and explain everything to everyone that I met.
I was drained, overwhelmed, overwhelmed, frustrated,
(10:52):
really angry at not being able to work, not being able to see my friends and
family, even things like not being able to go and have a shower when I wanted
as the energy that that took was all that I had for the whole day and I'd not
be able to do anything else.
I was exhausted from constantly having to assess what I could and couldn't do,
what was essential, what was
with the consequences of using the energy and what I just couldn't manage.
(11:14):
And when you're feeling like this everybody has
different reactions some go quiet go into
themselves and need time and space to recharge but as
I said before I get louder and I was on
whenever the carers came so to manage the fatigue of this behavior I had to
have a day off from carers every week I didn't have the energy to talk to someone
(11:36):
every day so I didn't have anybody come visit me on Sundays I had the day to
myself and felt like I didn't have to put on a face and just rested,
leaving any jobs to be done on the Monday.
A few of the carers, as I got to know them better, I could tell that I was doing
this and they often told me to go and sit on the sofa.
They'd bring me a cup of tea and got on with the jobs that I'd asked them to
(11:59):
do without chatting to me during their visits.
And this was amazing. They'd figured out that I was defending myself against
my ideas of what they thought of me and putting me at ease.
It was from the rapport that we'd built that they were able to do
this they'd spent time talking and listening to me
obviously reading between the lines of what I was saying
to them asking about how my health
(12:21):
and my life was and then adjusting how they treated me when I got frustrated
and annoyed they'd let me rant and cry and then would move on because most of
the time when someone's angry it isn't specifically aimed at you it's more about
the situation working with the public and dealing with a lot of complaints over
the years has taught me that.
Listening, staying calm, empathising and understanding goes a long way in helping
(12:44):
people to calm down in a stressful situation.
When I was working in Welfare at Work, a lot of the clients were angry,
defensive and unresponsive to offers of help and advice.
They'd been forced to come and see us and more often than not they didn't want
to be there and that was similar to the situation that I found myself in in my own home.
I didn't want to have carers but I had no choice so I masked my feelings as best as I could.
(13:10):
I took a dominant management type of role as that's what I felt comfortable
with and I tried to educate the carers working with me and what I felt they
needed to know about me and my conditions.
I assumed that they had prejudice about people on benefits with invisible disabilities
and I stereotyped them just as I felt that they'd stereotype me and proactively
(13:31):
tried to counteract that through managing them and informing them about chronic pain and fatigue.
I can't be 100% sure how they perceived this behavior or what they thought of
me but they all treated me really, really well.
They were kind, patient, considerate and thoughtful.
My preconceptions and stereotypes were wrong and I really hope that they saw
my behaviour changing the longer they worked with me and felt that they had
(13:54):
a role in helping me to accept my conditions and limitations and become much
happier with my life as they were a huge influence on me and just a massive
benefit to my life and my health overall.
So ableism is discrimination
against somebody with a disability and this it's
often internalized by people with disabilities as
(14:16):
we struggle to accept our conditions limitations restrictions
and general place in the world so I felt that by not being able to work and
financially support myself that I was worthless I was a burden on society and
not deserving of all the help and support that was available in sticking to
the mentality of fighting fighting my illnesses and pushing through,
(14:39):
when I should have been accepting and learning to live with them,
I really put off accessing care for much longer than I should have done.
My own internalised ableism made me feel as if I should have continued to look after myself.
By having to have carers, I was failing at life and should be ashamed of myself
and my own inadequacies.
I can sit here now and tell you how much I disagree with that and I've often
(15:01):
told friends and family to ask for help when they need it, not when they're desperate for it.
But we are complex creatures and we make decisions based on a variety of reasons.
For an example, I still struggle to use my mobility scooter as I feel like I
should make more of an effort to walk now that my mobility's improved.
(15:21):
It doesn't matter that by walking a long distance or standing for for a length
of time I would have consequences with my pain and fatigue levels for days or even weeks afterwards.
I still see it as a little failure when I use my scooter and I also find it a little embarrassing.
Having a walking aid or using equipment sets you apart from other people leading
to possible judgments and assumptions being made about you and I always want
(15:45):
people to judge me for who I am and not about my disability.
I do hide my disability sometimes times, which it isn't ideal and does nothing
to help reduce ableism in society, but that's my own issues.
So some people that you'll be working with will have these feelings,
beliefs and underlying concerns, and some of them will have others that are
(16:06):
more impactful for them.
I think that you have to discuss them with the people that you provide care
for, but you will also get hints and indicators in their body language,
tone of voice, temperaments and reactions.
So at the time, I felt massive amounts of fear, shame, guilt,
humiliation, distress, and was terrified of being judged.
(16:27):
And all of these can be perceived as negative and really big emotions,
which obviously came across to people in my tone of voice, body language, and behaviours.
But interpreting somebody's behavior can be really difficult.
And all I can say is just try your best and think about how you might feel in this situation.
What would you be worried about? What would you think that other people would
(16:49):
think about you? And how would you react?
I think that if you pay attention to how someone's behaving,
use all that you know about their lives, experience and thoughts about themselves,
then you'll be able to make inferences that are accurate or at least close to it.
And then by talking to them listening and questioning
why they're behaving in a certain way it'll lead
(17:11):
you to a greater understanding of them as an individual and be
better able to provide effective care as you can adapt
it to the person and help them feel safe in what
can be a very challenging and really uncomfortable situation by
asking questions finding out as much as you can about
the person their lives and their experiences careful listening
(17:31):
read between the lines and then
clarify don't assume and share your
own experiences if it's appropriate and this all works towards building a rapport
that can help you understand and hopefully manage their behaviors thank you
so much for listening i really hope that that's helped and if you have any questions
(17:52):
then please forward them and i'd be happy to answer them thanks.
Music.
Music.
(00:05):
Hi, my name's Victoria Bartle. I'm a contributor for the alumni website,
so you might have read some of my articles about living with multiple health
conditions, which impact both my mental and physical health.
I've personally employed carers in the past when I needed more support and I
still do get help with certain tasks by having a cleaner,
(00:27):
a gardener and a hairdresser to do the physical jobs that would use all of my
energy restricting me from doing other things like cooking for myself,
seeing friends and family and speaking at things like this.
So this video is about behaviours, the non-verbal communications that they impart
and how you can best interpret,
adapt and learn from the behaviours that your clients are exhibiting to provide
(00:52):
better, more individualised care.
We all behave differently in different situations. We all have things that we
find difficult to deal with and scenarios that make us uncomfortable.
Social anxiety, fear of public speaking, having a meeting with your boss,
all of these situations will make each of us react differently and exhibit different
behaviours depending on our own previous experiences and personalities. personalities.
(01:15):
In a care situation, I believe that by focusing solely on what the client is
telling you will only get you a small part of the story.
You won't learn who they are, what they need or how they're feeling about the
care through spoken communication alone.
You need to be able to read their body language as well as putting yourself
in their shoes and seeing the situation from a different point of view.
(01:37):
But being able to do this is a skill and like all skills, practice will help you improve.
So today I'm going to give you an insight into my personal experiences of receiving
care, how it affected me, the behaviours I exhibited, where they came from and
how the carers that worked with me dealt with it.
So hopefully this information will help you to see things from a different perspective
(01:58):
and help give you some ideas on how best to react and adapt your own behaviour
to develop the rapport, level of communication and ultimately satisfaction with
the care that you're giving.
So I became disabled over a number of years.
It was a slow process of increasingly impactful symptoms that limited and restricted
my ability to work, take part in social events and look after myself.
(02:22):
This meant that I did have some time to adapt to my ever-changing limitations
but it was still a shock when I realised that I couldn't manage to look after
myself completely independently anymore and that I was going to have to get some care.
Having to stop working, claim benefits and reassess my plans and expectations
for my life was a big change and one that I wasn't ready for.
(02:45):
I found myself fighting everyone.
Reducing my hours at work and then taking redundancy was fraught with issues
and I even went to a tribunal for disability discrimination due to my treatment
at work and claiming benefits is just a horrible experience which is time-consuming,
exhausting and humiliating at every term.
(03:05):
Again, I had to go to a tribunal to ensure that I had the right level of support.
And then accessing the social care system is another minefield.
You've got financial assessments, visits to assess your home,
different departments for every single aspect that you need to manage and coordinate yourself.
And it all added to the stress that I was experiencing at the time.
(03:28):
And throughout all of this change, I still had to keep up my medical appointments
with quite a few different specialists and clinics because I've got multiple conditions.
So physically looking after myself by cooking, cleaning, washing,
doing shopping and laundry, etc.
Just like the normal day-to-day stuff, they were often pushed to the back of the list.
(03:49):
And all of this stress, all of the challenges, the constant fighting for the
right help and support left me exhausted, very defensive,
irritated by the numerous systems that I had to interact with,
and just generally disillusioned with the idea of anyone being able to help
me without it causing me more problems.
Looking back now, I feel a little sorry for the care companies that I contacted
(04:10):
them, as they were faced with a person clearly unable to manage,
in desperate need of help but completely overwhelmed by everything that I've
been through over the past year or so.
My default reaction to emotion is to cry.
If I'm happy, sad, stressed, anxious, every emotional response from me includes
tears and the amount that I cried during these initial phone calls and interviews
(04:34):
must have been so difficult to deal with.
I was really at my lowest point when I had to employ carers.
I felt like a failure, that my my life was over, that I was a burden to society
and just a waste of space.
And when I think about friends of mine who've had to employ carers,
they've done so at a similar stage.
When you've reached the end of what you can personally cope with and accept that you need help.
(04:56):
And I can only speak to my experience of acquiring a disability and things are
obviously going to be different for people who've had carers all of their lives.
But from my experience, I was already struggling mentally with the idea of having
to have care but also realistic about the need for it.
This was also my first experience of anyone looking after me.
(05:17):
As a single woman in my 40s I had an individual experience of receiving care
which was impacted by my thoughts and feelings towards being disabled,
not being able to work, claiming benefits and having to rely on other people
to do things things for me.
My preconceived ideas of a person receiving care was someone who had had a disability
(05:37):
from childhood, an older person declining in health or someone getting respite
care after an operation or injury.
I did not see myself in any of these groups. When I started receiving care I
was 40 years old, lived alone and was used to working in a challenging job that
needed me to be be effective and also manage other people to achieve their targets.
(05:59):
I also looked fine.
I've got invisible conditions and it's only when I'm out and about using walking
aids that my disabilities are visible to people, which creates its own set of
worries about judgments and stereotypes.
I was receiving care in my own home, was relatively young and asking people
to do my washing up, chop food and prepare meals, tidy up and do my laundry
(06:21):
and this felt utterly ridiculous to me.
I didn't want the carers to think that as well I definitely didn't want to be
judged looked down on pitied so I behaved in ways that I thought would minimize that from happening,
When I was interviewing care companies and deciding which ones to choose,
I asked them lots of questions about the type of clients that they already looked after.
(06:43):
I wanted to make sure that I had carers who were used to interacting with people
my age who had acquired disabilities.
I wanted carers who understood invisible disabilities and chronic pain and fatigue
conditions, even though they're often misunderstood within the medical community.
I didn't want to have to explain and justify myself to every carer who worked
(07:04):
with me. although I did do this anyway as I was so insecure and worried about
their perceptions of me but in an ideal world I wouldn't have had to.
So when I'm in a situation where I'm unable to contribute,
can't do things or I'm limited by my health conditions then I'm immediately
uncomfortable and my reaction to this is to overshare,
(07:25):
to educate and make myself feel that the other person understands the reality
of my life and isn't making assumptions about me.
I'll go over the top in being happy about my health, making jokes,
being loud and generally showing how competent and able I am to make my own
decisions and enjoy my life with my disabilities.
I'd also drop comments in a conversation about my previous jobs so that the
(07:48):
carers would know that I used to work.
I'd mention doctors and clinic appointments, treatment plans and any alternative
therapies that I was trying to help them to see the reality of my conditions.
I'd tell them about the consequences of doing the washing up myself or hanging
out my own and laundry so that they wouldn't judge me for asking them to do such basic jobs.
I'd also stay in my pyjamas for their calls so that they could see that I wasn't
(08:12):
able to manage getting dressed that day.
And I'd physically emphasise my struggles moving around the house.
I'd be wincing in pain and holding on to walls and furniture more than I probably
needed to, because I felt that I needed to create a visual for them to see and
understand that I really was ill and needed the help that I was asking for.
(08:32):
I was trying to convey that I was embarrassed about without having to receive
care, that I wasn't faking, that my conditions were real and had a massive impact
on my life, even though the carers couldn't physically see anything.
The carers that I had were all very understanding.
When I mentioned my conditions, they generally knew somebody who had similar
ones or even shared their own experiences with me, which made me feel more comfortable.
(08:56):
I felt as if they'd understand me better if they knew other people like me,
and it made me feel less worried about their view of me and more relaxed about
me asking them to bring me a cup of tea or fill my hot water bottle up.
But I was also quite directive in my interactions with them.
I was used to managing teams and had decided that if I thought of the carers,
(09:17):
my cleaner, my hairdresser as staff who are doing a job and that job is to help
me manage my life, then I could cope with it a bit more easily.
I would tell them exactly how to hang my washing out, how I I liked fruit and
veg chopped and I would sit and watch them as they worked.
This could have been seen as demanding, picky and unrealistic,
but I felt like I was paying for service.
(09:40):
So I was going to have people do things the way I wanted them done.
And this all came from my working background and was definitely a coping mechanism
that I used to justify having carers without constantly worrying about the negative
connotations of being reliant on other people.
I felt that as long as I was organising my own care, paying for it myself,
managing the team that I had and directing my work, then I was still independent.
(10:05):
I was still in control of my own life and I wasn't a burden to anyone.
I really hope that my bossiness and oversharing was seen as insecurity and not just being awkward.
I'd hate to think that I was one of those clients that carers would avoid working
with, but I can see that my behaviour could have been seen like that.
I was demanding that I got easily frustrated and I even requested that a couple
(10:29):
of carers didn't come back to work with me as I wasn't happy with how they did things.
But this all stemmed from my own issues around my health deteriorating.
I was having to reassess my entire life, come to terms with physical restrictions
and make huge changes to the way that I lived and explain everything to everyone that I met.
I was drained, overwhelmed, overwhelmed, frustrated,
(10:52):
really angry at not being able to work, not being able to see my friends and
family, even things like not being able to go and have a shower when I wanted
as the energy that that took was all that I had for the whole day and I'd not
be able to do anything else.
I was exhausted from constantly having to assess what I could and couldn't do,
what was essential, what was
with the consequences of using the energy and what I just couldn't manage.
(11:14):
And when you're feeling like this everybody has
different reactions some go quiet go into
themselves and need time and space to recharge but as
I said before I get louder and I was on
whenever the carers came so to manage the fatigue of this behavior I had to
have a day off from carers every week I didn't have the energy to talk to someone
(11:36):
every day so I didn't have anybody come visit me on Sundays I had the day to
myself and felt like I didn't have to put on a face and just rested,
leaving any jobs to be done on the Monday.
A few of the carers, as I got to know them better, I could tell that I was doing
this and they often told me to go and sit on the sofa.
They'd bring me a cup of tea and got on with the jobs that I'd asked them to
(11:59):
do without chatting to me during their visits.
And this was amazing. They'd figured out that I was defending myself against
my ideas of what they thought of me and putting me at ease.
It was from the rapport that we'd built that they were able to do
this they'd spent time talking and listening to me
obviously reading between the lines of what I was saying
to them asking about how my health
(12:21):
and my life was and then adjusting how they treated me when I got frustrated
and annoyed they'd let me rant and cry and then would move on because most of
the time when someone's angry it isn't specifically aimed at you it's more about
the situation working with the public and dealing with a lot of complaints over
the years has taught me that.
Listening, staying calm, empathising and understanding goes a long way in helping
(12:44):
people to calm down in a stressful situation.
When I was working in Welfare at Work, a lot of the clients were angry,
defensive and unresponsive to offers of help and advice.
They'd been forced to come and see us and more often than not they didn't want
to be there and that was similar to the situation that I found myself in in my own home.
I didn't want to have carers but I had no choice so I masked my feelings as best as I could.
(13:10):
I took a dominant management type of role as that's what I felt comfortable
with and I tried to educate the carers working with me and what I felt they
needed to know about me and my conditions.
I assumed that they had prejudice about people on benefits with invisible disabilities
and I stereotyped them just as I felt that they'd stereotype me and proactively
(13:31):
tried to counteract that through managing them and informing them about chronic pain and fatigue.
I can't be 100% sure how they perceived this behavior or what they thought of
me but they all treated me really, really well.
They were kind, patient, considerate and thoughtful.
My preconceptions and stereotypes were wrong and I really hope that they saw
my behaviour changing the longer they worked with me and felt that they had
(13:54):
a role in helping me to accept my conditions and limitations and become much
happier with my life as they were a huge influence on me and just a massive
benefit to my life and my health overall.
So ableism is discrimination
against somebody with a disability and this it's
often internalized by people with disabilities as
(14:16):
we struggle to accept our conditions limitations restrictions
and general place in the world so I felt that by not being able to work and
financially support myself that I was worthless I was a burden on society and
not deserving of all the help and support that was available in sticking to
the mentality of fighting fighting my illnesses and pushing through,
(14:39):
when I should have been accepting and learning to live with them,
I really put off accessing care for much longer than I should have done.
My own internalised ableism made me feel as if I should have continued to look after myself.
By having to have carers, I was failing at life and should be ashamed of myself
and my own inadequacies.
I can sit here now and tell you how much I disagree with that and I've often
(15:01):
told friends and family to ask for help when they need it, not when they're desperate for it.
But we are complex creatures and we make decisions based on a variety of reasons.
For an example, I still struggle to use my mobility scooter as I feel like I
should make more of an effort to walk now that my mobility's improved.
(15:21):
It doesn't matter that by walking a long distance or standing for for a length
of time I would have consequences with my pain and fatigue levels for days or even weeks afterwards.
I still see it as a little failure when I use my scooter and I also find it a little embarrassing.
Having a walking aid or using equipment sets you apart from other people leading
to possible judgments and assumptions being made about you and I always want
(15:45):
people to judge me for who I am and not about my disability.
I do hide my disability sometimes times, which it isn't ideal and does nothing
to help reduce ableism in society, but that's my own issues.
So some people that you'll be working with will have these feelings,
beliefs and underlying concerns, and some of them will have others that are
(16:06):
more impactful for them.
I think that you have to discuss them with the people that you provide care
for, but you will also get hints and indicators in their body language,
tone of voice, temperaments and reactions.
So at the time, I felt massive amounts of fear, shame, guilt,
humiliation, distress, and was terrified of being judged.
(16:27):
And all of these can be perceived as negative and really big emotions,
which obviously came across to people in my tone of voice, body language, and behaviours.
But interpreting somebody's behavior can be really difficult.
And all I can say is just try your best and think about how you might feel in this situation.
What would you be worried about? What would you think that other people would
(16:49):
think about you? And how would you react?
I think that if you pay attention to how someone's behaving,
use all that you know about their lives, experience and thoughts about themselves,
then you'll be able to make inferences that are accurate or at least close to it.
And then by talking to them listening and questioning
why they're behaving in a certain way it'll lead
(17:11):
you to a greater understanding of them as an individual and be
better able to provide effective care as you can adapt
it to the person and help them feel safe in what
can be a very challenging and really uncomfortable situation by
asking questions finding out as much as you can about
the person their lives and their experiences careful listening
(17:31):
read between the lines and then
clarify don't assume and share your
own experiences if it's appropriate and this all works towards building a rapport
that can help you understand and hopefully manage their behaviors thank you
so much for listening i really hope that that's helped and if you have any questions
(17:52):
then please forward them and i'd be happy to answer them thanks.
Music.
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