A member of the Lived Experience Group for the RESOLVE study shares her experiences on medication and weight gain, and advice for clinicians going forward.
Talking to people about taking medication for their mental health and – crucially – potential side effects, can be tricky for healthcare professionals, but there are serious consequences to failing to do so.
This was the experience of Justine, a LEG (Lived Experience Group) member on the RESOLVE study, who has struggled with weight gain after being on antipsychotic medication.
RESOLVE is looking at this issue in order to find non-pharmacological solutions to this type of weight gain, for example, exercise and healthy eating.
“I don’t think I’ve ever had a conversation about weight gain with a clinician”
Justine’s been on antipsychotic medication for many years, and said her first experience being admitted to a mental health ward and put on medication was an incredibly negative one, which has had far-reaching impacts.
“My experience first taking antipsychotic medication was being sectioned, put in hospital, and then being given medication, not knowing why I was in hospital,” she said.
“I know that’s partly to do with being ill, but then being given medication and not even told I was ill and that’s why I was having medication, not being told anything about the medication at all, let alone the fact that it may affect me physically.”
I don't think I've ever had a conversation about weight gain with a mental health clinician.
Justine says the fact she wasn’t told anything about why she was taking medication or the effect it could have on her means she’s all for somebody, at some point during the early process of the treatment journey, talking to people about medication.
“It may be that the person wouldn’t be responsive or receptive to it early on, but it doesn’t mean you shouldn’t try.
Physical and mental side effects of mental health medication
RESOLVE is looking at the relationship between weight gain and antipsychotic medication and found it’s a very common experience. Despite this, Justine only found out when she suddenly had gained the weight.
“But even then I didn’t know why I’d gained it – I just knew I had, and put it down to me eating more. I knew I was feeling hungrier than normal but I didn’t know it was down to medication.
“It’s a shock. Your clothes don’t fit. You’ve got to buy a whole new wardrobe. At a time where you don’t have the finances to do that because I’d lost my job, so it’s not just the physical impact.”
Justine says this also then had a further impact on her mental health.
“Self-esteem was low as it could have ever have been, because of being people talking about diagnosing me with a particular mental illness and me not wanting that label; self-esteem was low because of losing my job, and then to boot, you’ve got two stone of weight you’re carrying around as well. So you’re carrying a heavy burden. There’s a lot to recover from.
“I think people do really, really well to recover from it. But it would be nice if somebody helped you with the things they can help you with – and weight gain is one of the things they could help you with.
“And you can help yourself if you know it’s happening. If you don’t know it’s happening, you can’t help yourself.”
It might be that it's impossible to stop people gaining some weight, but you could catch it early, or earlier, before it becomes a big problem.
A proper weight management pathway
Justine believes that setting up pathways of support early around the issue of weight gain could have a huge impact.
“It might be that it’s impossible to stop people gaining some weight but you could catch it early, or earlier, before it becomes a big problem,” she said.
“So, for example, I gained two stone in weight. If I’d have been given the heads up at one stone, I might not have gained the other.”
A large part of is this treating people as a whole, holistically, rather than just a ‘mental health label they’ve got to fix’.
“There’s a whole person that is behind that, and it’s all important to us – it’s not just about reducing mental health symptoms and giving us another problem,” she said.
“I’m hoping that people don’t get put on a ward and given medication and not talked to, because I very much felt like I was a thing and, being treated like a thing, why would anybody care about you putting weight on, because you’re just a thing that needs medication to control these symptoms that other people are not happy about.
“Sounds sad, doesn’t it, really? But I’m hoping it’s different now.”
Tailor the plan to the person
Justine now acknowledges that there’s no ‘right or wrong’ when it comes to talking to people about their medication, as long as it happens.
“I don’t think there’s ‘with everybody you should share at week six and then at week 12’, I don’t think it’s as set as that. I think you’ve got to go with the individual and where they’re at and make a decision. It’s about testing the water with the individual and doing it in a very careful way, so as not to offend.”
I feel better about my own lived experience. It's been good to be part of a project that will have an impact on others that will be in a similar position to myself.
Impacts on medication compliance
Another danger of not talking to people about their medication journey is that if, like Justine, they’re not aware of the side affects, they may not continue taking their medication as prescribed, she fears.
“For a lot of people, it’s not until you’re picking it up from the chemist and you’ve got the list of side effects inside the box – for some people, that might be the first time they ever learn about side effects, if they haven’t been spoken to on the ward. What a lonely, lonely time that must be for people.
“That’s important to have as a conversation with a clinician because on your own, you might think, well, I’m not taking it then. And then you’re in the position where the problem’s back again.
“If they don’t talk about the side effects and get you on board with the side effects, then at any opportunity an individual can say, ‘well, I don’t want these side effects’ and make a decision on their own, which is dangerous for their mental health.
“So that’s quite a serious thing, if they don’t talk about it, pretend it’s not there, and then somebody is just on their own and makes their own decision.
“It’s about getting the person on board with it. None of us like it, but those of us that do take antipsychotic medication and know the side effects of it, we’re making a choice, aren’t we? Because we’ve learnt we don’t want the mental health condition, but we should also be given a choice about the physical.”
Gaining self-acceptance and helping others
Ultimately Justine believes getting involved in research like RESOLVE has had a positive impact on her self-acceptance, which in turn helps with self-esteem.
“I feel better about my own lived experience. It’s been good to be part of a project that will have an impact on others that will be in a similar position to myself.
“It’s a little bit ‘there before the grace of God go I’ sort of thing, isn’t it? I can’t go back to the beginning of my first experience of psychosis and being given medication and change any of that, but I can change it for somebody else.
“You’re trying to change the system, and boy does it need changing. It’s almost like you’re rescuing yourself again, but you’re doing it by rescuing other people – well not rescuing, that’s the wrong word isn’t it? But it feels like rescuing.”
Read more about the RESOLVE study on our project page, and find out more about getting involved in research here.
You can also read last week’s blog on RESOLVE from our Public Involvement in Research Manager Annie here: Lived experience priorities for management of antipsychotic-related weight gain
And blogs from LEG members Ian and Julian here:
