Carole

Age at interview: 59

Brief Outline:

Carole first gained weight as a teenager, and it increased further in later life as her health deteriorated. Carole’s weight is very much linked to her wider health concerns, and she finds it difficult to control her eating, take exercise, and lose weight alongside managing her conditions.

Background:

Carole is 59, and has 1 adult son. She is retired due to her health, but previously worked as a teacher. She is white British.

More about me...

From a young age, Carole has been a “big build” and felt larger than she was, although up until her teens her weight was under control. Taking on caring responsibilities as a teenager when her Mother’s health deteriorated, Carole gained some weight. This has crept up in later life as her own health declined.

Carole finds it difficult to lose weight with her health conditions. Carole suffers from Multiple Sclerosis, meaning she gets very tired and cannot go out. In the evenings when she feels “low”, she turns to comfort eating. Her MS means she has poor mobility in her hands, making it difficult to prepare food from scratch. Carole also has sleep apnoea and has trouble controlling her eating as it makes her very hungry. However, since receiving treatment she has lost 1.5 stone. Carole has also faced depression from a young age. Difficult periods in her life, along with her wider health and weight concerns, have worsened this. Her depression also makes it hard to stop overeating, “it’s a sort of spiral that you go down because the depression then gets worse and you feel bad about yourself…it’s all too overwhelming, so you can’t do what you know you should do”.

Carole wants to lose weight to improve her energy levels, as well as her self-image and her health. She has tried various diets and weight management groups in the past, but has found regimes where you have to count calories to be “muddling”. Although she knows her weight loss needs to be about lifestyle change, Carole feels overwhelmed by the amount of weight she has to lose. Carole has recently started to attend a support group around overeating. She finds that this offers a space where she can talk about her weight in ways she feels embarrassed to with friends, and get suggestions and tips from others.

Carole finds exercise difficult due to her MS. Even if she manages to swim, she often finds the getting dry and dressed too exhausting. Her embarrassment around her body is another reason she has given up swimming. Access issues with classes and facilities being located some distance from her home has been another barrier to exercising. Carole also worries that being seen doing exercise could impact her disability benefits.

Carole finds that when she goes to the GP for health checks, her concerns around her weight have been dismissed. She feels healthcare professionals are embarrassed to discuss weight, leaving her feeling “failed”. The only support she has received from healthcare professionals has been a referral to a dietician, who offered generic advice that “wasn’t what I needed”. Indeed, Carole feels counselling would help her, but this is not something she can afford to pay for privately. With increasing levels of obesity in the country, Carole believes that new ways of dealing with weight need to be considered. Carole suggests that a “rehab” style programme might help people work through their weight issues and improve their quality of life- as well as saving the NHS money. Carole believes that to address her own weight issues, she needs to learn to manage her eating and exercise patterns. However, in the context of her health issues, Carole feels unable to address her overeating, “I have a choice about what I put in my body in theory but it doesn’t seem, when these things take over me, it doesn’t feel like choice then.”

Carole says ‘the bigger you get, the less you can do’. Being overweight and multiple sclerosis combined with a lack of adequate facilities in her area make it hard to control her weight through exercise.

I can’t just go on as I am now because the bigger you get, the less you can do and the, so and that tied in with the things that I can’t do with the multiple sclerosis. The exercise is like hardly any at the moment because so and the bigger you get, the harder it is to exercise and the more embarrassing it is to exercise. I’ve stopped swimming now because I’m so embarrassed of getting undressed in the in the pool, to go in the pool. And I can’t walk for because of the MS so I do little bits in the house and I’ll, and I go to a chair yoga class and we sit and we do, you know, stretches and thing and I do that at home but it’s not enough for me. It’s, you know, I need I need more.
 
Aqua aerobics. I’ve done that, I did that, I did do that when I was I did do that for a while and loved it but then getting out afterwards and the fatigue with the MS, I just couldn’t get myself dry. I couldn’t get myself dressed and there was nowhere to sit to recover and it was too much. Plus the woman, even though I told her about my issue, my problems, she’d say, “Come to the front, Carol. You’re not doing enough.” And you can’t, you know, ah, but I love swimming and I will, that did me so much, physically and mentally. So.
 
Okay.
 
I did go to there used to be like a chair exercise class. Chair-aerobics, we used to call it, which sounded a bit more better than chair mobility classes. It sounded a bit more go but that was run by the council, which was great, and we do, we’d sit in a chair and do our exercises but they closed that down for funding reasons. So no there isn’t one. There is the other side of [city] but, if they do go to that, I then can’t get back because I’m too worn out from it.
 
I think it’s harder, when you’ve got like mobility problems and stuff. It’s harder, obviously, with the exercise and stuff, so you’re more likely to put the weight on so there’s less, there’s less choice there I suppose than if I was very fit, if I was able to move around a lot with my, you know, if I was able to go, you know, on a ten mile walk like I used to do or go to the gym or, you know, those sort of things. So that’s not choice, that’s, you know, that’s, it’s unfortunate that I can’t do those things now and that obviously won’t help my weight.

Carole feels that life events, her MS and her weight have all contributed to her depression. Doctors tend to focus on her MS but she thinks her depression is the worst problem because it affects her weight.

I think it’s I think it I think it’s all linked and I think the weight is linked with the depression and the depression is linked with the weight. I know I’ve had a couple of periods of, a couple of really bad things in my life like when our mum was very ill, I got, when I first started putting weight on when I was young, that was really difficult. That was when I first got depressed. And then my twin sister died suddenly and I had like a massive breakdown and, since then, my depression goes up and down and I I’ll cope for a while and suddenly it’ll go down again.  I do get depressed because I’m so big. It upsets me. It’s I can’t do things that I want to do. I get depressed because of the MS. I’m scared it’s going to progress like my mum’s did. It upsets me, because of that, it stops me doing the things. I can’t do the, I can’t go to the gym, I can’t, you know, my legs just don’t work properly and the fatigue is too bad. But also, when I am depressed, I eat more, so it’s all, they’re all linked up to each other I think.
 
Okay.
 
And again, the health, the doctors and things [sighs] they see my worst problem as the MS. I see my worst problem as the depression because it affects so many other things like the, like my weight and like my, I feel, I hate myself because I’m [sighs] I just hate myself because of because of my weight and the fact that I can’t manage to do anything about it at the moment. The fact that I can’t, that I’m embarrassed with it.

Carole gets panicky if she doesn’t have bread in the house because “it’s like a drug”.

It’s weird. It’s just [sighs] it really, it’s complete craving and you get so panicky, like if you haven’t got bread in the house, I panic because I know I’m going to need it and it’s like a drug, it feels like, and it’s [sighs] it’s so, it’s bizarre. It’s really weird how it’s so physical and like now, I can say, well, just don’t get that bread. Don’t buy it. Don’t or get crackers or something or have something you don’t like but it’s so overwhelming and I have to go out and get some and or I’m sort of like oh, I don’t know, it’s like you feel like you’d steal it, if you needed it, it’s so, such an overpowering feeling.

Carole has MS and ‘overwhelming fatigue’ She hopes that carrying less weight would improve her energy levels.

If you if you have to give me one reason why you want to lose weight, what would that be?
 
Energy. I want to be able to do things again. I know I can’t do very, as much because of the MS but at least if I had some more energy to be able to, not to get, it’s not so, it’s not out of breath.
It’s the fact that I oh such, such absolutely overwhelming fatigue, absolutely shatterness and so, if I didn’t have so much to carry around, that would still be there with the MS, the fatigue, but at least I wouldn’t have this to carry around as well. It’s it would help with that I think.
 
Okay. So that’s your main reason.
 
That’s my main reason. I mean there’s loads of reasons like feeling better about myself and my health, obviously, but that the, to have a bit more energy would be fantastic for me. It’s yeah.

Carole found calorie counting ‘too muddling’ and switched to a ‘less regimented’ programme. Being weighed in class made her more self-conscious of her weight and of the task ahead.

Yeah. I’ve done, I did Weight Watchers years ago. For me, it didn’t work. I just found it, it was counting calories and things and I found it too muddling for me, too hard. The Slimming World was better and I just went for a short while and that was when I was a lot better.
 
Why was the Slimming World better?
 
I think because it was more, it wasn’t so regimented. It wasn’t like a portion of this, it was much more easy to follow. And you could eat more of what you wanted but just smaller amounts of it all, if you had, then you don’t have that, and, it sounds silly saying it because in my head I know this, but it’s so why don’t I do it. I don’t know. It’s.
 
Is it the one that you are weighed in front of other people. In a group?
 
Yeah and I found that very hard so, yeah, yeah.
 
What, hard in which in which sense?
 
Because, because it showed me how big I was, how much I did weigh so it was like, well, there’s no way I can lose all that. It’s too, it was too big an amount too big a mountain to climb for me. And other people were saying, “Oh, I’ve got to lose five pounds.” And there’s me thinking, I’ve got to lose, you know, however many stones and it’s just like, [sighs] I’ll never manage to do that. So.
 
Okay. So it was it was, you found that the task was too much.
 
It was too much, yeah. It was too overwhelming for me.

Carole could not afford the fees of one weight management programme and was not aware she could be referred by her GP to some programmes.

Have you tried to find if there is any specific like, I don’t know, weight management  programme within sort of your local area?
 
Yeah, yeah, again I’ve looked on the internet and there’s, for, so I’ve looked and, you know, but you have to pay for it.
 
Okay.
 
And I can’t afford. It’s, you know, yes, you can, you know, I read this thing and it was just like, yes, that’s what I need, that’s what I need and then it’s like, you know, hundreds of pounds and when you’re on benefits because you can’t work because of everything then you just can’t.
 
Can you be referred by your GP to?
 
No.
 
To them?
 
No, they wouldn’t, it’s, no, you’d have to be, you have to pay, it’s a private sort of thing. It’s.
 
But I mean some of these programmes sometimes they have an agreement in which NHS patients could be referred to them.
 
Oh okay.
 
Have you asked?
 
So what.
 
Your GP for it?
 
No.
 
If there is any programme they could refer you to?
 
No, I’ll do that when I go next.
 
Okay.
 
I’ll make I’ll make an appointment, when you’ve gone, and do that [laughs].

Carole has recently joined Overeaters Anonymous. She can talk about her compulsive eating there because the other group members share this experience, “you don’t feel a freak”.

I’ve just joined three weeks ago now, Overeaters Anonymous, which is like Alcoholics Anonymous but for over eaters and the idea of it is good and but they go through these steps of whatever and what’s good is that they make you realise that it’s not your fault. There is something that’s making you do this. It’s not, I can’t stop it at times so it’s, but I mustn’t beat myself up about it. The problem is they’re all very thin, the women who go to it, because they’ve been going for years and they still go to support each other. So I go along and I’m like this huge thing and I, my issues are different to theirs in in my head. They’re not because they’re still overeaters but they can control it at the moment they’re managing to control it, whereas I’m not and they’re very supportive and they’re very, you know, very kind and sweet but they are all very thin. So I feel it’s difficult for me, difficult for me going there
 
Overeaters Anonymous, when you go to, to the those meetings, do you feel like talking about it.
 
I can talk there because I don’t know them. I know them, I’ve met them three weeks, you know, three Saturdays, mornings, but they’re not they’re not like my friends out, in my real life. It’s, they’re friends from there, you know, and they’re very kind and very helpful, so I can talk about it there. But, even with friends who are who are a bit over, who are a bit overweight, I still find it, I can’t talk to them about it because I’m just embarrassed and it’s hard to admit to other people that I’m out of control with my weight.
 
But in this group that you go and you talk about your weight, does it help? Does it help talking? Does it help getting feedback? And encouragement from other people?
 
Yeah. And it helps to know you’re not the only one and it helps because they’ve all been, because they’ve all had a lot, I think they’ve, I don’t know how big they were but it sounds like that are complete, it sounds like they’re like me, when they can’t actually stop themselves eating at times and so you don’t feel a freak. You don’t feel because other people, who aren’t like that, it’s, they can stop, you know, they can and they can go on a diet and yes, they might they might need to go on a diet later or, you know, after a few months or whatever but they can control it, whereas I feel, with me, it’s completely out of control and that’s the that’s really, that’s the hardest thing for me. It is that complete, it just takes over, takes over, takes over me, yeah. It’s like, it feels like a disease, in a way. It’s or like, you know, like they say it’s like, it’s based on the Alcoholics Anonymous, the Overeaters Anonymous, and I, I assume it’s the same sort of feeling that alcoholics get when they crave, when they need a drink or drugs or whatever. It feels exactly the same sort of feeling as that I think.
 
So there are steps, isn’t it.
 
Yeah.
 
Yeah. So what are those steps?
 
I can’t remember really [laughs].
 
It’s okay. Don’t worry, don’t worry.
 
I think it’s admitting to yourself that it’s not, that there’s something, they say it’s something higher than you that’s causing it. It’s not you that’s causing it yourself and they talk about abstinence, which I’m starting to, I’m starting [sighs] to, well, I’m realising I’m going to have to stop eating bread because it’s my trigger thing, so things like that, so I’m learning things like that from them. Rather than just cutting down, you’re going to have to cut it out completely and the one, they had like a little workshop, at the one I’ve just been to this weekend, and they were talking about how to cope at Christmas time and stuff and they were staying things that helped them. And I was saying things that that will help me, so it’s about putting things in place to help yourself.
 
Right. Okay.
 
Getting some suggestions and ideas.

Carole can talk to her friends about her MS and her epilepsy but not her weight, because it is “too embarrassing”.

Tell me about sort of support around you. I mean you live on your own?
 
I live on my own. My son it at university and he comes back every now and then but not, yeah, I’m on my own now so.
 
And what about friends and family around or…?
 
My, no family, my twin sister died suddenly and my mum and dad have both died and my other sister is in New Zealand, so no family nearby, well, no family here. I’ve got some good friends. A couple of my friends who have, probably my best friends, my closest friends have fallen out with me because they found, not fallen out, I think they find my health issues too difficult to cope with so they’ve completely backed off and that’s very weird.
 
So but I’ve got some, I have got some other good friends, yeah. But I’m quite a private person with, I’ll talk about my health but not about my weight. I find it too embarrassing. It’s yeah.
 
And with your good friends, you don’t like to touch the issue of weight gain?
 
No.
 
Okay
Which is strange. I can talk to them about the MS. I can talk to them about the epilepsy, anything that’s like that, that’s medical but I can’t talk to them about the weight. It’s too embarrassing somehow.

Carole has epilepsy, low thyroid, Multiple Sclerosis (MS), irritable bowel syndrome (IBS) and depression. She feels the GP isn’t interested in her weight, or is embarrassed to discuss it.

Well, I go, I have to go to the GP quite a lot for different health checks. I have epilepsy, low thyroid, the MS and all sorts of other things as well and they don’t seem to be interested in my weight. I often go and see, oh and I’ve also got bad depression at times and they just say, “Oh, we’ll treat this or that and don’t worry about the weight, don’t.” I think they’re embarrassed because I’ve got, because I’m obviously very big and they don’t really know what to say.
 
That’s very interesting?
 
It’s horrendous. You know, you go, you build yourself up to it because I feel so embarrassed being like that. I hate myself as I am and you psych yourself up to go and I sort of pour out what I’m saying and they say, “Oh well, don’t worry about it. We’ll treat the depression.” Or we’ll treat the pains of the MS or whatever, “and then, you know, then then that’ll be all right.” And you like pull your hair out really with it.
 
Has, at any point, someone, a health professional, suggested you losing weight and giving you some advice on how to do it?
 
They’ve they sent me to a dietician. And she was lovely and she looked, I knew all that she was telling me, bless her heart, you know, it’s all on the television now, what’s healthy, what’s not healthy and portion sizes and she was very good with me but it wasn’t what I needed. I needed some counselling, some, I don’t know what I needed, I don’t know what I need now but not what she was giving, bless her heart.
 
But the doctors, they don’t say, they never say to me, “You must lose weight.” They’ve never brought it up in a in a consultation. It’s only if I’ve gone to them and said, “Help me with my weight.” And that’s when they sent me to a dietician.
 
And that was insufficient?
 
Yeah, yeah.
 
Okay.
 
I went again just recently and they sent me to another dietician because I have irritable bowel as well and she was going to sort, she is helping with that but she said, “Oh it might, we might be able to, that might affect your weight but we’ll look at the weight link into if once you get sorted out with the IBS, with the irritable bowel.” But again, it was me having to ask.
 
They have told you are overweight but it’s.
 
Well, they weigh me. And then it’s like they then change the subject. None of them have ever said, “You need to lose.”
 
X amount?
 
Yeah or they haven’t given me thoughts of, ideas of how to do it or talk to me, they haven’t talked to me about it. You know, “Have you tried this? Is there anything that would help you?” And so it very much feels like brushing it under the carpet like you shouldn’t talk about it. You know, they’ll weigh me and see that I’m so big and that’s it. No no help.
 
Okay or they refer you to a nutritionist.
 
Well, it was the dietician, they did once, yeah, yeah. Yeah, yeah, once, well, twice but then, when I said it wasn’t helping, it was like, “Well, let’s look at the MS.” You know, I don’t know. It’s as if they’re too, it’s as if they’re too embarrassed about it and they don’t want to bring it up.
 
And I remember having one of those, you know when you get to a certain age they say you can have a free health check and so they did they did my weight, they did my blood pressure and the heart and she said, “Oh you’re, everything is fine.” And I went, “Well, it’s not fine is it, you know. I’m, you know, look at me, okay, my heart rate might be all right, my blood pressure might be fine but look at me.” She said, “Oh no, no, you scored all right on this. You’re fine.” And so then that makes it even worse, even harder to talk about [sighs] because it is embarrassing and so you then, I find it hard to bring it up, when they keep hiding it from me. Oh and they don’t want to talk about it.

Because appointments are so short, Carole finds that weight is always left until the end and then there is no time to discuss it. She thinks doctors find it easier to discuss other issues, but weight is “a sort of taboo subject”.

And, as I say, when I’ve when I’ve tried to go, I often, I hate going to the doctors because you go with these little, when you’ve got lots of different things you always go with a couple of things and then they’ll say, “Oh we’ve not got time to talk about that next one.” Or I’ll say what I’ve got, this this and this that I want to talk about. “Okay. We’ll talk about the physical, you know, we’ll talk about your thumb is poorly or we’ll talk about, you know, get that fixed. We’ll talk about.” And the weight is always left until the end. “Oh sorry, we’ve run out of time now. So, you know, we can’t talk about that.”
 
Have you tried to make an appointment just to talk about your weight?
 
Yeah, but then they don’t do it. They’ll say. [buzzing sound]
 
It’s okay.
 
Oh right. That’s when they sent me to the dietician and then and then the follow-up, even though I’ve tried. And you see a different doctor every time and you have to go through everything about yourself and then and then they’ll help.
 
This is in your GP surgery.
 
Yeah. [buzzing sound] There’s so many different doctors there now and the ones that, they they go to like all these different practices and you can’t get to see the same one each time, even though you would go round to see, you know, to the other places but [sighs] and they keep changing like a new one, a young one will come and everyone will be good at the other things but not about the weight. It feels like a sort of taboo subject somehow.

Carole says that residential rehab for overeaters would save money in the long-term, for example on antidepressant prescriptions and weight loss surgery.

Drat. You see, I think I think they should have you know, like rehab, I think they should have a rehab place for overeaters, you know, for obese people, for, especially, if you’re as big as me. If they took, if they had a rehab place where they could teach you how to do it, how to include it in your own life where they live with you or whatever so they can see the problems that you have. And then oh, what’s the word? Guide you through that so everyone is different with how they do it. So if it was structured for me with the issues that I have I know it won’t happen will it, but that’s what I, I think that’s what I, people who find it so hard, like myself. There’s obviously some reason why we’re not doing it and we obviously need help in a different way than other people. So going to a rehab place, I would love it. It would be fantastic and I could come back and put all those strategies in place in my in my life. I’d be in the habit of doing the right things then. Whereas for me to suddenly turn off those things, is too hard, too difficult.
 
Okay.
 
And it shouldn’t be but it is. In my head I know I know what I should do but I just I can’t.
 
Yeah and it would save, I mean all these people who have the weight loss surgery and things, that must cost thousands and thousands, hundreds of thousands of pounds. All these people off work with depression, on antidepressants and stuff, if they could [sighs] it would save, although it would be a lot of money in the, you know, to start, to set it up, I think it would save and it would help people’s quality of life and it would help people get back to their work and help oh, help with so many things. Yeah, I think that would, that’s what someone like myself would need. That’s what I would, that’s what I know would help me. And I can’t afford to do it myself.