0:04

Hi everyone and a big welcome to the Living with SMA podcast.

0:08

We talk about all things spinal muscular atrophy related, but topics discussed

0:13

are not exclusively for individuals with SMA, so there should be something

0:16

here for everyone. We also do things differently. For starters, our charity,

0:20

SMA UK uses different hosts and everyone involved gets a final say in

0:24

the creative process of making these episodes. We cut through the jargon

0:28

and the content is accessible for everyone. All the stories are individual

0:32

and we are committed to sharing as many different perspectives as we can

0:35

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0:42

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0:45

And remember, no topic is off the table. If there is something the

0:49

SMA community wants to talk about, this is the place. We really hope you

0:53

enjoy the podcast. And please do connect with our charity and share your

0:57

comments online and let us know what you think. From all the team

1:00

at SMA UK, thank you for listening. Hello everyone and welcome back to

1:15

a brand new episode of the Living with SMA podcast. Now today's episode,

1:21

we are gonna be taking a look at the topic of mental health.

1:25

And in particular, we're gonna be looking and talking about how mental health

1:30

affects people with disabilities in particular. I've got two guests joining

1:36

me today as well and they're gonna be sharing their personal stories and

1:40

journeys with mental health. So it's gonna be a very intimate chat today

1:44

and hearing and sharing our stories. So should we start off with some

1:49

introductions? Let's see who we are talking to today. I might as well

1:53

kick things off myself. You may know me already as one of the

1:58

regular hosts of the SMA podcast. My name is Ross Lannon, I'm 29

2:03

years old and I have SMA type 3. I live in Cornwall and

2:09

I am a lifestyle and disability blogger and radio host.

2:15

So I'm gonna hand over now to Becca. If you can give us

2:17

a little intro to who you are please. Hi, everyone. I'm Becca. I'm 24 and

2:23

I have SMA type 2. I live in West Sussex Down South. And

2:28

I work in PR for a financial services company, live in my own place and...

2:35

Yeah. Brilliant. And Ellie. Hello. I'm Ellie. I am an Internship Arts Psychotherapist.

2:47

I live in Southampton, Winchester Way in Hampshire.

2:51

And yeah. And I've been a carer for Becca before and slash kind of currently

2:59

every now and then I have my own

3:02

private practice as well. And yeah. Really interested in discussing

3:09

mental health around physical disability. I don't have SMA myself or a physical

3:13

disability but just really recognizing that there is

3:18

a missing point there. Yeah. And it's gonna be really interesting today

3:25

to have this new aspect to our chat because obviously we're gonna be

3:30

hearing more about Becca's story and journey with mental health. But I think

3:34

it's really interesting to have your input today as well, Ellie, from a

3:38

more professional background as well, but also a personal... There's a personal

3:42

relationship and bond there with you guys as well. So it's gonna be

3:47

really interesting to have this chat today. Now mental health is obviously

3:53

a huge subject and incredibly important for us to talk about.

3:58

I wanted to start off with just sharing

4:01

these figures here. Now, I've got them written down here and it obviously

4:05

just to make you aware, obviously the figures are always changing.

4:09

But these are from the mental health foundation. So

4:13

apparently there are more than 15 million people

4:18

in the UK, which makes up 30% of people who

4:23

live with one or more long term conditions.

4:27

And out of those 15 million people with conditions,

4:31

more than 4 million of those also struggle with their mental health.

4:35

So we're talking huge numbers here. Ellie, I wanted to start off with

4:40

you as the professional of the group. What is

4:46

mental health in general? 'Cause I feel like there's it's very easy for

4:50

all of us just to say, to get that difference between just having

4:54

a general bad day like we all have, but we're here to talk

4:57

about actual mental health. So could you sum up what that is and the difference,

5:04

please? Yeah. Big question. And as you say, it affects a large, large, large proportion of us.

5:13

And if I'm honest, doing assessments, I have a couple of questions in

5:18

there that are talking about whether you have suicide idealization or you

5:25

self harm or... And in those questions, I think I'd be more worried

5:28

if someone says, "No. Never ever. Never ever thought about what's the point.

5:33

Never, ever wondered why am I doing all of this? This is mad especially

5:38

in this day and age and what we're going through at the moment

5:42

in the sense of a collective consciousness." So I think as you said,

5:48

it does affect us. All of us. And I suppose if it's all

5:54

the way from anxiety to depression to DID,

6:01

multiple personality, DPD. So it's a massive range that we're talking about

6:07

here as well. And if it starts to affect your day to day

6:12

life, if we can't get out of bed, if

6:16

work is becoming too much, if family situations, something's happening,

6:21

maybe you want to work that out. Self identity, self worth is so low that

6:28

the week is being affected in our day today life.

6:33

And as I said, I think that's an... We've got quite a few

6:36

people probably listening to this going, "Do I fit into that category or

6:41

not?" That's what we're only asked to decide as individuals, I think, to

6:45

be honest. And there's always, always stuff about ourselves.. Definitely.

6:55

And I think what you said there is really important that it is

6:59

something that will affect us or whether it's us personally or whether it's

7:03

a friend or a family member. There is always gonna be a connection

7:08

within our lives to mental health. So it's really important that we talk

7:11

about these things and it comes with a bit of awareness as well.

7:17

Becca, I wanna sort of... If it's okay with you, hear a little

7:20

bit about your journey now. Whatever you are comfortable to share in terms

7:25

of your mental health journey and how did it all begin?

7:30

At what stage did you realize that you might need a little bit

7:33

of extra help? Yeah. Sure. So I'm 24 now and I think the

7:38

time quite for me was when I was around 14, or it was 15,

7:43

I think. I had a very... Obviously there was a lot of issues

7:49

like medical issues and stuff growing up the same as everyone else who's

7:53

listening to this podcast. But in terms of my family life and my

7:56

home life, I had an extremely supportive family. I have a young sister

8:02

and a brother and we are very cookie service. You can use that.

8:08

But I kind of hit 14 and started really, really worrying about going

8:15

out and doing things away from my mom. And obviously

8:18

that age is the point where you're going out with friends and stuff,

8:22

like you're starting to do things on your own.

8:25

And most of that's just excitement and learning how many of the boundaries

8:30

you can push. But I think for me, I

8:34

was so worried that, was I gonna go out and choke in public

8:39

and not know... My friends wouldn't know what to do and there would

8:42

be nobody nearby to help me. So I started trying to mitigate those

8:49

worries by having carers close by and at the time I was using

8:53

agency carers and not many of them knew me.

8:56

And all of this was kind of... I didn't understand why I was

9:00

worried about that or why those things were making me panic. And I

9:05

didn't explain that to anybody because I thought it was really silly.

9:12

And I remember the turning point for me was

9:15

a day where I was meant to get the train to Brighton, not

9:19

even with friends, with a carer. And I got the train and I

9:23

felt so sick all the way on a train and I got there

9:28

and I worried about... So I got really sick and I almost vomited on the

9:34

side of the road for the past myself. And I decided that I

9:39

wanted to go home. And I said to the Claire, I was like,

9:41

"I'm not well. I think I've got, but I'm not well." So we went home and

9:46

everything, and I remember that evening and mom was like, "So what's wrong?

9:50

What's happened?" And I remember I just falling apart. And I just said I

9:56

was... I just felt so scared to go anywhere and do anything because

10:00

of what might happen with my condition, basically.

10:04

And that was the turning point for me because that was when

10:08

I realized that actually it was really affecting what I was doing and

10:12

what I was able to do with my life and be

10:15

the moment that I said to other people that I was struggling.

10:20

And I think because I've been trying to hold it in for quite a

10:22

long time, at that point, I went downhill very, very quickly.

10:28

And I went through my GCSEs and the first year of college

10:36

literally only leaving the house for school and for those singular lessons.

10:43

And I did not leave the house other than that.

10:47

Every morning I would wake up and feel instantly sick. I would... And

10:53

I have really physical symptoms from anxiety as well

10:57

which obviously with SMA can be much more damaging. So I would have kind

11:04

of cyclic vomiting. So I could be sick two or three times in

11:10

the morning before going to school. And obviously with SMA, that has a

11:14

big risk of aspiration and aspiration pneumonia. And

11:19

it was a vicious cycle because my whole anxiety was around my health and

11:25

making my condition worse and all of my symptoms from anxiety

11:30

were then making it worse. So it was very, very difficult to combat.

11:35

So at like 16, I went into CAMS therapy.

11:41

And even back then, there was an 18 month waiting list

11:45

which seems pretty quick compared to what it is now, but there wasn't 18

11:49

month waiting list but my GP was exceptionally good and managed to bump

11:54

me up in a waiting list because of how physically ill and how

11:59

much worse it was making my condition. And I went through those

12:05

therapy sessions and stuff to help with my anxiety and

12:10

it improved. It was very slow. Took kinda like 18 months to really

12:15

be able to get back to normality. And then

12:20

when I went to Uni, I went from my anxiety to depression instead.

12:27

I still had anxiety, I still had panic attacks, but I've learned through

12:31

CAMS and through CBT. Yeah. I always confuse CBT and CBD,

12:38

which is cannabis, so not that one I've learned through that therapy to

12:44

be able to learn some coping mechanisms to ground myself to cope. But

12:53

depression was something that I couldn't learn coping mechanisms for and

12:59

I couldn't learn ways to combat that. And that was more scary.

13:04

Not at the time, but looking back, that was harder for me because

13:09

nobody could, say, "If you do this, this and this, you'll be able

13:14

to get through it." And if I'm... I still go through it with

13:20

that. I'm still in therapy. I've been in and out of therapy now

13:24

for seven years and I know exceptionally well now how to

13:30

navigate that and how to deal with it. But I've had to make

13:33

peace with the fact that it's gonna be something that I live with

13:37

for the rest of my life. It's probably gonna be something that fluctuates.

13:41

And most of the time I can cope fine. But it was and it is still a massive learning curve with how to cope. And

13:54

even seven years, one or seven years through therapy, I still hit points

13:58

where I'm like, "Okay. This is a new thing. This is a new feeling.

14:01

What do I do with this?" And I think 90% of all my mental

14:07

health problems have stemmed from my condition and my disability whether

14:14

it being my actual health, whether it being,

14:17

all of the carers that we need to have. I have had a

14:21

lot of issues around that and things. And I think there's so many

14:25

more things that we have to deal with because of our disability. And

14:30

I think that's why it's important to talk about because so many people,

14:34

I think, are probably in the same boat, but really don't know how

14:38

to bring it up and have a shame around the fact that we've

14:42

grown up and been able to get through all of these

14:47

surgeries, all of these therapies and stuff and then

14:50

this is something that isn't spoken about and you don't know how to bring

14:54

it up with your family when it happens. So, yeah.

15:01

Exactly. No. It's really, it's incredibly important. And

15:05

just what you said there as well about the fact that us people

15:10

with disabilities, it's almost like we've already got enough on our plate

15:14

to deal with physically. And then when you add

15:18

the mental health aspect on top of that, because there is no

15:23

quick fix, especially when it comes to things with disabilities. 'Cause

15:26

the disability is the root of the problem that's causing all the anxiety

15:33

and everything. But unfortunately, that's out of our hands and we can't

15:38

do anything about the disability. So it's almost a vicious cycle.

15:43

Yeah. Definitely. It's... And Ellie, as a trained therapist, obviously hearing

15:53

Becca's story there and obviously you guys tell me about the process of

15:59

how you guys met and how it was for you to hear this

16:05

aspect. Was you aware of much disability related

16:11

mental health issues before... No. You met back? No? No. Not at all. I had

16:15

started my life in a very different way. I was in sales,

16:23

I lived in Hong Kong for a bit and sold art out of

16:28

the gallery there, etcetera. And came back from that world and

16:34

went on cruise ships and sold art there and was a very,

16:38

very different life. And when I came back from that and realized

16:43

sales was not me and I was selling my soul along with it,

16:51

I realized that I was really interested in

16:55

mental health having been through a mental health journey myself.

17:00

And I'd seen through the artwork and selling the art that people had

17:05

real emotional reactions to the artwork. Whatever the person.

17:12

And on cruise ships I saw a lot of people obviously,

17:14

'cause it's quite a good way to go on holiday if you've got

17:17

a disability and a bit of an easier place to be settled and

17:22

know that you're back on and off and etcetera.

17:27

So I met a few people that had bought art off me and

17:32

had told me their story in mental health wise and why that picture

17:36

spoke to them. So leaving that world, I went to go and train

17:42

and I went into a masters. And in doing this masters, I realized

17:47

I hadn't worked with anyone in a professional but very personal element.

17:53

I'd just been in business really. So I was looking for a job

17:59

role that could give me this personal but professional element

18:04

and I found Becca who was looking for carers who had moved to

18:09

Winchester to do her degree also. So it's fantastic. I was like,

18:13

"Oh. I'm doing my masters and you are doing your degree."

18:15

My Masters in London but it was still great. We ended up doing

18:19

many along stint in the library together Throughout. Yes All the fun.

18:29

And yeah. It was just perfect because Becca was

18:36

so able to tell me how she wanted care, so able to train

18:42

me, talk me through. But I don't mind Becca me saying in a

18:48

sense. But what I noticed was that Becca was feeling very mentally unwell

18:56

while I met her at Uni. And sort of...

19:03

And I think, I suppose because I was doing my Masters in integrative psychotherapy,

19:08

I was maybe able to pick up on some key things

19:13

and... A bit spacey at times or panicky at times. And no,

19:19

I just found that no one in the care system that I was

19:23

then employed by was asking any of these questions. We were obviously worried

19:28

about her physical health and we had to

19:31

fill in every care report when it came to that or any aspiration

19:37

or any cough assist we did or any nebulizer or any illness.

19:42

But no one was writing about her mental health

19:47

state at that time or what was going on.

19:50

And so I think that's... We kind of met in a time where

19:54

I was incredibly interested in it and doing

19:58

a four year Masters which is a bit insane. And so it was

20:03

the only thing that was on my mind and Becca was doing her

20:06

degree and feeling all these things as she was saying just then,

20:11

but not really knowing how to talk about it or what to say

20:17

and it being an extra worry in being at university as well,

20:22

which is a horrendous place at times as it is So, yeah. Yeah. You

20:32

could almost say it's almost like... As cheesy as it sounds,

20:36

it's kind of fate that you guys found each other at a time

20:39

when maybe you needed each other. And it kind of works out

20:44

well in the end. Becca, at what stage did you feel comfortable to

20:49

start opening up a bit to Ellie in the sense of,

20:54

it's finding the boundary, isn't it? Between, you've got a professional

20:57

relationship, she is employed as your carer, but you obviously got on well

21:02

enough as friends as well, and you had that bond that I guess

21:07

at some point you felt comfortable enough to open up and start talking

21:10

to her a little bit about your mental health. Our relationship was always

21:13

interesting because I think like now, yes. We are good friends now and now

21:18

sort of since I left uni and since I moved back home, our

21:23

relationship has definitely changed and shifted. But when we were at uni

21:28

and stuff, yeah. We always got on well, we always had good rapport

21:33

and stuff but there was always a level of professional boundaries

21:39

that I think I hadn't seen before in a carer. And I think

21:45

possibly simply because of your personality and they were also because of

21:50

obviously the training you were going through and you were taught, weren't

21:53

you? To kinda make sure you stay professional and things like that.

21:57

So it wasn't so much as... It wasn't so much I felt I

22:01

could open up because we were friends. I think it was because I

22:04

felt safe and I knew that I could kind of trust that

22:10

what I was going through really would be able to hold that

22:13

and be able to take that and not panic and not freak out or not know

22:19

what to do. Anything it's like a lot of the triggers that I

22:24

worried about when I was trying to hide things and people. I worried

22:31

a lot about the fact that if I revealed too much,

22:33

the carers were gonna leave and if the carers left then obviously, I

22:37

couldn't finish uni. Throughout the whole of uni, the care was pretty turbulent

22:44

anyway. There were several periods of where, Ellie, for the whole time was

22:48

meant to be working part time, so 24 hours a week,

22:51

but I'd say for more than half of it

22:54

you know, there were times where she was doing like 48, 72 hour shifts in because there wasn't enough people.

23:02

And my mom would have to come and take care of that stuff.

23:04

So I think it's very difficult to work out the balance. So being

23:08

able to be yourself around carers who you are with 24/7, who you

23:14

never have time away from, but also knowing that

23:18

if something happens and that carer wants to leave, then

23:24

it's your life effectively that it's going to affect It's not theirs as

23:28

other people can get a job specifically in the care industry extremely quickly.

23:34

So I think I was always conscious of that, but... And I knew

23:38

that Ellie knew how to deal with a panic attack. She knew how

23:42

to deal with day as well. I did not wanna get out of

23:45

bed and refused to do anything or whatever or zoned out.

23:50

And I think that was the reason why I was able to open up

23:54

because I knew that... Yeah. It effectively wasn't gonna scare her. And

23:58

I think that was something that I hadn't had before because of the

24:02

fact that carers aren't trained in understanding mental health. Once I'd

24:08

kind of opened up and we'd spoken a little bit and stuff, I

24:13

think Ellie and my mom and stuff tried to work out

24:16

how to help the other carers understand it and stuff because

24:21

the other carers didn't know how to deal with my panic attacks. When

24:25

I kind of started self harming a couple of times, obviously I'm not strong

24:31

enough to do any real damage, but I couldn't get rid of it

24:37

on my own or whatever. Those carers were very scared

24:44

because they're effectively in charge of my wellbeing and they... Like Ellie

24:50

said, they've been taught how to do my nebulizer and my cough assist and

24:54

everything. And they had lots of training on that, but they weren't taught

24:56

how to deal with any of the other stuff. So

25:00

yeah. That was kind of the main turning point, I think.

25:05

Now, it's really interesting that we were just talking about the fact that

25:09

when it comes to care, specifically with agencies as well, there's so much

25:13

training that goes into the physical aspect of being a carer. You get

25:19

taught all the manual handling and all the stuff that you need to

25:23

know, but like you said, there's just not that mental health aspect to

25:28

it, is there Ellie? No. No, there isn't. And also, there's a form of training

25:34

that... I don't even know how you'd explain what it is that you

25:38

go through when you're training as a therapist, but this ability to

25:42

separate yourself from the situation that's going on in front of you,

25:47

from a person that's going on in front of you. Because

25:50

if we sit there, we project all our stuff into it

25:55

at the same time, then all we're doing is getting caught up in all

25:59

the transference and the counter transference and kind of then suddenly

26:03

we're in this big pickle and we don't know where we're going with

26:07

it. And that's never taught. To hold ourselves as carers, as...

26:17

I think just to be a carer, you've usually gone through some sort of element

26:22

of mental health yourself or something in your family

26:27

that you find is a lovely way to then connect work

26:33

and life. But a lot of us don't do our own. And so in not doing our own work, we don't see when we're

26:41

getting caught up in our client's work to do. And I think that's

26:47

something that's never spoken about. We also don't have a place as carers

26:52

to have supervision if we're the company. We don't really have a place because

26:58

our supervisors and our managers also have never been trained in mental

27:03

health. So we may have a place where we can go,

27:07

we need more space and time here to help us with

27:12

our client in this way, in a medical sense or often needs to

27:17

new whatever, but we can't sit there and say, "Hey, I don't know

27:22

what's about that shift, but I feel really overwhelmed about that shift."

27:28

And everyone kind of freezes up and goes, "Well, maybe we should look into

27:36

this or maybe we look into getting a different healthcare professional."

27:40

And it doesn't help you if the CA is the healthcare assistant or PA. Hearing

27:45

that, It's still like, it's your time as well. So there's all these

27:51

relationships going on, these elements of relationship going on in a carer

27:57

role, caring carer role that is never spoken about and it's so important.

28:04

And I think that's potentially what I was able to bring was this separation.

28:09

When Becca was going through what she was going through, it wasn't mine

28:14

and it didn't need to be mine. So I could sit and be

28:17

with it without the fear and work out and think about logically then,

28:24

"Okay. So what's happened? Do I call the ambulance? Do I call Martin? Is

28:31

there a plan in the sense of Becca's mental health versus whether she's

28:36

aspirating? And being able to step back from the situation and not make

28:44

it mine. I think that was potentially what Becca was thinking at the

28:47

time. It almost sounds as well like you guys almost really helped each

28:55

other in the sense of Becca, you felt comfortable to

29:01

almost open up and talk to Ellie a bit because you know she

29:04

had that experience and that knowledge and understanding of mental health

29:07

already. And also Ellie, Becca almost opened your eyes a little bit to

29:14

the disability world and sort of improved your awareness and your knowledge.

29:18

Yeah. Absolutely. And I think when we... I suppose we've gone a little

29:24

bit to the next step of when we kind of realized that

29:28

I could handle the situation potentially a bit better and Becca realized

29:32

that she maybe needed a bit more help or we needed to look

29:36

for a therapist because I couldn't be her therapist because I was her

29:41

carer. And I don't even think at that time I was qualified to

29:45

be. And so when we started living with that, it then really opened

29:52

up eyes of lots of people with physical disability, just down to having

29:58

me brought into the room, which is quite incredible. So we went on

30:03

that too and yeah. Very, very much so did it open up my eyes too. And

30:10

to what people with disability go through on a day to day basis,

30:17

just for example, not wanting to get up in the morning with anxiety

30:22

and depression when you have a disability is not wanting to be touched,

30:28

walled, time, wasted, feeling heavy in the voice, feeling vulnerable in

30:38

any way mentally. And then you've got to go through this whole vulnerable

30:42

experience to then get on top of it. And it's again,

30:47

something not discussed in a very sheer way that it needs to be.

30:54

I think when you train as a carer, is discussed in the sense

30:58

of keeping your modesty and hearing who would like versus what we would

31:08

like to do. And if it's maybe a bit for us, but it's easier

31:11

for you, then you've got to think about that.

31:15

But not in the sense your already suffering with anxiety and depression

31:19

and you've got to have such intimate elements of yourself touched.

31:30

Even as a process of getting up depends or going to bed. There's so many

31:38

times I'm thinking it's coming up in my head at times where it's a

31:42

lot different for someone with disability. Or just to get into bed to

31:47

take off your makeup, it becomes... Small things become so difficult when

31:52

you have mental health issues and depression. Just

31:59

taking off your makeup, brushing your teeth, hygiene goes down and it's

32:01

the difficulty. And Becca, why do you think that people with disabilities

32:12

in general are more likely to struggle with their mental health?

32:16

So I think there's so many reasons. I think it's like...

32:20

I think it's important to distinguish between like physical disabilities

32:23

and learning disabilities. 'Cause I think they're two very, very separate

32:27

things. And I think because of my journey and because of towards the

32:32

end of uni by this time, it worked me for getting on three

32:37

years. And when I was doing my dissertation, I did it on

32:43

the portrait of physical disability in cinema and in books and in quite

32:48

a lot of my analytical work, I looked at kind of mental health and

32:54

how that's portrayed with disabilities and stuff. And when I did the research,

32:59

it was really interesting that I found quite a lot of research and

33:02

people were learning difficulties and their mental health and like there

33:06

literally hardly any physical disabilities. So I think they're very different

33:10

and I think 'cause there's a lot of reasons. I think one of the biggest one's probably is your health.

33:18

I think I've kind of realized I have quite a lot of medical

33:22

trauma, which I didn't even know was really a thing And yeah.

33:28

Like when I had spinal surgery, I knew a lot of people who're listening

33:34

all know how scary that was and how difficult it was.

33:38

My specific experience, I was told that I would wake up and not

33:43

be intubated or anything, but I woke up with an intubation tube in and

33:49

I couldn't speak, obviously. So I had no idea what had gone on.

33:54

My mom had been told I wouldn't wake up for at least 24

33:58

hours, so they'd sent her away because they said that I would need

34:01

her over the next eight or so days in ICU. And I woke up while she

34:09

wasn't there. The sedation wore off. So I had very vivid memories of

34:14

waking up, seeing everything had gone wrong, being on my own for more

34:19

than four hours, not being able to say anything. They thought they could

34:24

damage my vocal cords 'cause they struggled with intubation and that's why

34:29

the people were. So they thought I wouldn't speak again.

34:32

Obviously I did, but I suffered with damage to my throat so I

34:38

now can only eat pureed food. So I've had a big risk of

34:43

my aspiration over the years. All those kind of medical traumas that I

34:49

can remember. But then also the ones that I can't remember from getting

34:54

my first body brace fitted when I was 18 months old and my

34:59

mom has told me that they had to literally pin me down while I

35:04

was screaming, to do the... I don't know. Mesh stuff to

35:10

cast the brace. And yeah. I think I didn't even realize that.

35:16

And like Ellie said, having someone roll you or touch you every day

35:22

instead of like kinda have so many random triggers, I have a real

35:28

phobia of gloves and I've gotten better with it, but I realized that

35:33

I think that it's from being in hospital for months and months on

35:37

end and I associate people wearing gloves, to me, feeling pain or being

35:43

ill or whatever. And it's something as simple as that. Like carers are

35:48

required to wear gloves if they're agency workers.

35:53

So, small triggers every day that occur can be very difficult.

35:58

So I think, yeah. Medical side of it is a huge thing. I do

36:01

think having carers is... For me, has been a massive reason why I've struggled

36:08

my mental health. I've had carers since I was five years old, so

36:12

I'm 24 now. I reckon I'm on my 140th carer, I think. And

36:21

by the time I was 19... That's what?

36:24

14 years of having care and Ellie was the first one that I

36:28

had been able to form a bond with in the sense that I

36:33

was happy to spend time with her, but

36:37

she was able to separate herself from me. I'd had carers that were

36:42

like 40 or 50 or whatever that didn't get me involved in their lives, but

36:47

they weren't somebody that I was able to converse with and spend time

36:51

with and stuff. I've had a lot of carers that

36:54

were not able to hold their own. And that there, became my... Can I swear?

36:57

I don't know. That became my... I don't know. And that was very

37:07

difficult. I've had carers kind of emotionally abuse me. That took me years

37:14

to kind of realize like years down the line of therapy when people,

37:19

my therapists are going, "You know, that's not okay

37:23

that someone did that." I was 10 years old. I didn't know.

37:26

And fear of abandonment, every time someone hands in their notice,

37:36

specifically if you had a good bond with them,

37:41

yeah. I have massive fear of abandonment which does

37:46

seep into my relationships and other things. And I've had to

37:50

work on separating the two. Yeah. I've had a lot of issues with

37:58

guilt and I think that's been a lot of my depression.

38:01

I felt so guilty for my siblings, for everything I had to see

38:07

growing up, for my parents, like for the lives that

38:11

they had turned upside down and never thought they would have to

38:16

have such a strain on their relationship, etcetera, etcetera. So many things.

38:22

Everyone goes through with a disability, the whole like, "Why me?

38:27

Why is this happening? It's not fair." But I think

38:34

obviously a lot of people are able to find outlets. They go for

38:38

a run or they go to the gym or... I don't know. They do kickboxing or whatever.

38:46

The people that are really physically disabled, obviously we can't do that

38:50

and we're essentially being watched 24/7 even if

38:56

the carer's in the other room. I had a carer's room at uni, but whatever

39:00

I did... If I'd thrown something on the floor, if I'd broken something,

39:04

a carer would come in and have to

39:07

sort that out. And I think I really struggle with not being able

39:10

to feel my emotions for fear of what was gonna happen.

39:16

I think there's so many reasons why disabled people experience worse mental

39:22

health. Yeah. I mean, that... I mean, you've pretty much summed it all up

39:28

there. It's a very heartfelt answer because... Yeah. There are so many different

39:35

aspects of... It's stressful enough going through all these physical changes

39:41

and the fears that come with physical decline in your health and things.

39:47

And then there's the added element of having a carer and trying to

39:51

get a carer, maintaining care. I had it even last week,

39:57

you get... You have conversations with the counsellor, you have to go through

40:00

reviews of your care packages and things like that.

40:03

And those conversations in itself is incredibly stressful because you think,

40:07

"Oh my God. They're gonna reduce my hours. I'm not going to be

40:09

able to do this or that." So there's so many elements that all

40:15

these little bits just add up to your overall mental health. And you never

40:20

get a break. It's not possible. I went on holiday with Ellie to Dubai last

40:26

month and I emailed all my carers and I said, "For this week, I'm

40:32

not looking at my emails. Please send any emails to my mum. She will deal with it in this situation."

40:39

And I try my hardest to make sure that I try and separate

40:45

it, but you can't really. You are responsible for a team.

40:50

And this time last year, roughly, I took over my own care team. I am now

40:56

the official employer, I do all the supervisions, the payroll and I also

41:01

work full time. That time commitment is such a stress. But also,

41:07

I am now responsible for five people's livelihoods, their emotions, their

41:14

career plans, whatever. And that is a whole another level of trying to

41:20

maintain boundaries. And with what Ellie said about the fact that when you

41:26

used to have supervisions with the care company and stuff, there was nothing

41:31

in place to help you. Well, I am now the one that has

41:34

to do the supervisions. And I really think there should be some kind

41:38

of external... The fact that I pay a small amount of money each

41:44

month to a payroll company, who I send in the hours and they

41:47

do the tax for, I really think it should be a thing included in

41:52

most people's packages that you're given money to

41:56

pay some kind of company or small organisation to run supervisions and then

42:02

deal with those because I would always be there for my carers and because

42:08

I owe them a lot and they are good people. But one that's

42:13

very difficult for me to hold, if they tell me any of that

42:16

stuff. And two, most of them wouldn't want to because

42:20

I am their employer, there's no other line of management to go through to.

42:24

And I think that is a big issue. Yeah. The boss now.

42:31

That widget. It's got many positives to it too Yeah. I think we

42:37

could spend a whole different podcast talking about care systems and...

42:44

Yes. And care companies and mental health around that as well.

42:51

I agree with Becca. I think spending money towards an outsourced HR system

42:55

or someone that can hold what... 'Cause the carers are individuals potentially

43:03

going through their own mental health issues too. And so, yeah. It's almost

43:10

like with Becca. The sandwich is switched. And

43:14

what we were experiencing down here, she then has to experience on the

43:18

other side of separating yourself, your stuff with the us. Exactly.

43:27

Yeah. It's a huge subject and it's definitely, like you said,

43:32

something that needs more sort of heart put into it and more thought. It

43:37

definitely needs more to be done. This is a subject that we could

43:42

go on and talk about for hours. But I just want to thank

43:46

you guys for sharing your personal stories with us today. We are gonna

43:51

do a part two. We're gonna do another episode with you guys where

43:55

we're going to look a little bit more in depth at what support

43:59

actually is out there available and what can be done to improve.

44:04

Like some of the suggestions we just made at the end there,

44:06

what improvements still need to be made and sort of the importance of

44:10

starting these processes from a younger age as well.

44:14

We're gonna go into all of that in part two. So,

44:17

yeah. I just want to end this on a thank you note. Just

44:20

thank you guys for sharing your personal story and your relationship and

44:25

backgrounds and... Yeah. We will continue this into part two. So thank you

44:31

for that. Yeah. Thanks as well, Lannon. No worries. And if anybody listening

44:36

today as well has any questions or any thoughts regarding any of the

44:41

subjects that we have spoken about today, please do get in touch with

44:45

SMA UK. We will leave an email address

44:50

in the bio of this video. So, yeah. Please get involved.

44:54

And if you've got any questions that you would like any of us to answer in the next episode, we will definitely do

45:01

that. Thank you for watching and we will see you again very soon.

45:06

Goodbye. You've been listening to the Living With SMA podcast. We hope you

45:11

can join us again next time. But in the meantime, don't forget to

45:15

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45:18

more on our website at smauk.org.uk.