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Report transcript in: Isaac's story of living with pain
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Isaac's story of living with pain
Please Report the Errrors?
computer.
Brilliant.
Good morning. Would you like to introduce
yourself?
Yeah. So I'm Isaac. Um I live in East London.
I have four dogs live with my husband.
Um, I work for an organisation.
Organisations that I really do a lot of stuff on co-production and
co-production for me is really important because it gives people a voice.
It enables people to have a voice,
um, favourite part
drinking gin
and eating pizza.
And I am live in Stratford, which I absolutely love living in East London.
Thanks, Isaac.
And what role does pain play in your life?
Uh, the role that pain plays in my life is
a really complex role.
So as somebody that's lived with pain for really, um,
a long time,
it has been
at times
heartbreaking, frustrating, Um,
sort of, uh,
when I
feel like I I
don't know how this is gonna come out. So,
um,
sometimes I feel like my my brain, my body
and my my
mind and my body don't work in
in
in the same space.
And when you live with pain,
it can be really frustrating because you might
have lots of things to do and then actually on that day just not be able to do anything
that's had a massive impact that's impacted
more than any of my other health conditions.
Because a lot of people don't
one believe that
you're
in or I'm in as much pain
as I am
two. I've always felt like I've had to explain it,
and each time you meet someone new, you have to explain it.
So that might be having to explain it to friends and family that even
friends and family still don't get it,
um, having to explain it to,
uh,
people that you're gonna go and get help from, don't get it.
And it just adds another layer of.
Actually, I can't have the same life as somebody without pain.
Often the pain is so bad, like, um,
and I hope this is not upsetting for you, But often the pain is so bad.
I just don't wanna be here.
It makes me a time to really suicidal.
And
then when
I'm in those spaces, then they say, Well, it is mental health or it's
you know
they don't want to deal with the pain.
They want to deal with the mental health side of it.
and actually, if they dealt with the pain,
there will be less impact on the mental health.
If
I could
have a magic wand, what I'd want people to do is really understand
how pain affects people on an everyday basis. It's it's meant
that
I have to have different types of relationships with people,
can't always do what I want to do.
It's affected my health.
It's affected my ability to find work and be in in in employment.
It's affected all sorts of things,
and it would be so much easier for me to be on benefits
unemployed,
um, popping pills because that's all they ever seem to want to give me as pills,
then having a life with that purpose and meaning
it comes at a big cost, wanting to have a life purpose.
I mean, particularly when you live with long term pain
and
like the pain is like one element but not
being able to think clearly when you're in pain
and not being able to have lots of energy.
And I always say
to people imagine like you're really, really tired and
you're in pain like most people would go and lay down, take some painkillers.
Da da da. Actually, even laying down is painful.
Even
being
a sleep, you know, if you can get to sleep at all,
is is painful.
So it plays
lots of, um
it has lots of effects on my life.
Often, people don't believe
me, and I have to challenge. And that
has had a negative impact on
my own
well being. And
I don't trust professionals,
which is really sad.
So the very people that you should be trusting, I don't trust them.
And I feel like if I have an appointment, I can't talk.
I go in there, I'm already anxious.
I already know that I won't get my needs met because my experiences has been from
Oh, uh,
yeah, this is the mummy and daddy issues. This is a historical thing to
oh, pain doesn't really exist. It's psychosomatic to
Oh, well, it's really, really, really, really bad.
So what we'll do is we'll put you on medications
that would just make you sleep 24 hours a day.
It's never really been about
what I needed.
Um,
yeah.
So what would you want those health professionals to give you if you could
have a magic wand and do
what you want.
I would want people to, First of all, respect people's stories
really make the process really uncomplicated,
So I often get discharged from services and I'm laughing.
But it's not a it's a it's a nervous laugh. I often get discharged because actually
being able to manage appointments when you're in pain is
extremely difficult or when you've got other complicated health challenges,
and then you end up being back at square one.
So don't discharge people.
Be respectful in your approach. Understand what's important to people.
Know that there is a long history of people's
reasons why they're in pain. Try to explore that,
um,
validate people's experiences
in a really empathetic, genuine way.
Don't offer just, um, analgesic medication.
But really think about the holistic,
um, but also think about the impact that
living in pain has people that love and support me.
Um, but trust me,
help me find a solution
and really helped me build the right plan. For me,
having consistency has been really important.
And
I feel like every time you have to tell your story again and again,
and that just really traumatises me,
um
and then
having people with lots of power that say, Oh, well,
you've tried this. This doesn't work. Let's try this. And like,
No, let's try what
I think is best for me. I'm happy to
have a conversation with you What might be different?
But actually,
I know what
what has worked for me. And I know you know,
the other thing is like some of the questionnaires
and the measures that they use are just,
like, so not human.
And if you think if I think about, um,
like we in your pain on a scale of 1 to 10,
I'm over the idea of 25. I'm not on that 10 scale.
Um, to have a really
proper measurement of how you can ask people about their pain.
Don't just assume that people are doing OK because we have to
live every day or I live every day with masking it all
just to get through,
um,
and think about the whole person. So from,
uh, their ability to work their ability to maintain relationships,
the ability to have, you know, sexual and function and section of relationships
and emotional intimacy to the ability to plan for the future.
Like I've learned things like, Oh, you know, pacing
and
that really useful. Like a six week course on pain management
is useful, but actually,
we live with this. We need long term support. We need
places to explore.
Um,
yeah, I'm not sure I'm answering any of your questions.
There you are.
Is there anything you'd want? Somebody who is also living with long term pain to,
you know, from your
experience?
Yeah.
So I would say Don't give up.
Um,
there are some really good people out there.
Um, ask lots of questions.
Write everything down, take a friend with you,
and then
it's OK to,
you know, not go to appointments. If you can't,
you know, don't
push yourself so it's detrimental.
Ask for help. Keep on asking for help.
Just don't give up.
And then if you're lucky, like I've been in the last six months,
if you can connect with other people living with pain,
they've got so much advice and information for you.
Um
trust that you do know your own body
and
you don't
need to be be believed that
you know you you are The pain is affecting you in the way that you say it is.
If people don't get that, that's their thing, not yours.
Um,
take the time. Be kind to yourself.
Is there anything else you'd like to add before we come to again?
Yeah. I think what I'd like to add is
that
the more
people share their experiences of living with pain,
I think the better
pain services, the better medical science will be. The better
clinicians will be.
And
although then you might have some really difficult moments,
there are some really good people out there
that can help you.
It's about finding your way to the right place.
Um, to really get that right support.
And don't take no for an answer. That's easier said than done.
And make sure they think about you as a whole person. Not just the pain.
Thank you for sharing your story.
Thank you very
much.
You're welcome. Thank you. Shall I stop the recording? There
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