RESOLVE LEG member Julian talks about the trade-off between physical and mental health, treating people intersectionally, and the importance of good communication.
In our final blog on the RESOLVE study, which is looking at non-pharmacological solutions to weight gain from antipsychotic medication – e.g. exercise and healthy eating – we hear from LEG (Lived Experience Group) member Julian.
Julian has struggled to stay within a particular weight since going on antipsychotic medication, and says he’s tried different diets but has still found it an issue.
“I guess it fits the narrative of physical health versus mental health and why you can’t seem to have both,” he said.
“Often I’d felt over the years that I’d had to trade my physical health for my mental health, and this was one such instance.
“You then get into this vicious sort of circle of being put on medication that increases your weight, which draws attention from your GP, who then potentially advertises NHS weight management schemes – when it’s actually something that’s been prescribed through the NHS that’s caused the issue, or one of the big problems.”
Fighting mental health and weight stigma
Julian has always been quite open about his mental health issues, and says the stigma attached to both mental illness and weight frustrates him.
“I’m quite open about things like this. I recognize there is considerable stigma attached both to mental illness and to weight gain and to people of a certain body shape and to people who have a certain diet and who eat various things and so on and so forth, and it annoys me.
“It annoys me intensely that people have not only to battle with the physical reality and the mental reality of these things, but that that is also compounded by stigmatized attitudes, attitudes that are created by human beings at the end of the day. So anything that people can do to sort of say, ‘actually let’s cut to the chase, let’s try and rid ourselves of this particular stigma has to be worthwhile and positive’.
“And I think if my contribution can open up conversations for others who may be struggling to start a conversation to say, ‘actually it’s perfectly normal to be thinking about all these things, it’s perfectly normal to be worried about these things’.
“But it’s also perfectly normal for people to come together as a collective and say ‘even if I’m okay, if you are not, that’s not okay’. We need to be doing something a little bit more than just focusing on ourselves.
“The intersection of mental health, psychosis and weight is a triple whammy. This is what intersectionality is all about.
“So we need to be recognizing if we’re going to do something about any one of those individual stigmas, we need to be doing something about how it works collectively as well, because that’s the reality for lots of people.”
Using research for change
Julian says being part of RESOLVE has helped him feel like, as a community, people who experience this are fighting back about the situation they find themselves in.
“It’s about saying, ‘I don’t want this situation to continue’,” he said.
“I don’t want this situation to be prolonged and to go on generation after generation after generation – I want to do something to help bring about a better situation, even if it turns out to be too late for me.
“And I think that ability to compare notes whilst working on something that is actually a way forward is a really powerful thing.”
‘Ensure people have enough confidence and support’
His advice to people who are struggling is to give interventions a chance.
“I think people with mental illness often, out of desperation to find a remedy, actually do lots and lots of different things, but they don’t give enough time for something to actually work,” he said.
“That was certainly my experience of CBT (cognitive behavioural therapy), for example – I initially thought this isn’t going to be any good.
“And then I thought, actually, I’ve got to give it a try, so let’s put it into place. And it has helped me. It’s not been the utopian, complete answer to all my problems, of course it hasn’t, but it’s given me something for me to work on, and I think this is a key thing.
“We need to ensure that people have enough confidence and enough support to stay with this pathway and to give it a go.”
Advice for clinicians prescribing antipsychotic medication
As in Justine and Ian’s interviews, Julian says his top tip for clinicians prescribing antipsychotic medication is communication.
“When I was first put on antipsychotic medication, I can’t remember my consultant ever talking about side effects; he never talked about the side effect that was possible weight gain,” he said – something the other LEG members also had experience of.
“It’s only because I researched it myself – and of course one of the problems is, if your research is limited to the little leaflet that comes in your box of medicine and that little leaflet tells you you could die if you take this medication – which inevitably most of them do because the pharmaceutical companies have to cover themselves – you think, is this a real thing?
“So I think the principle thing that anybody prescribing this has got to do is to talk about the side effects, to get people to understand what they’re going through.”
Bringing people into their treatment journey
Julian does say that in more recent years interactions with mental health and healthcare professionals have improved.
“Whenever there’s been a change to my medication they’ve said ‘go and have a think about it, this is the new medication I’m thinking of putting through, go and do your own research. Come back next time and tell me if you want to go ahead’. That never used to happen.
“If people perhaps recognize that right from the start that weight gain was a possibility, maybe at that point before they put the weight on, they could think about diet. They could think about perhaps I need to exercise a bit more. Perhaps I need to exercise at the right time of day a bit more. Perhaps I need to be eating more regularly. All the stuff that we’re told, but we don’t often do.
“If at the start somebody had said, ‘right, weight gain might be a problem so you might need to have a think about adjustments to your life as a result, before the weight goes on’, the weight might not even have gone on in the first place.
“You need to be thorough but you need to also have a way of saying ‘I’m giving you this because I think it’s going to have a positive impact on that, but one of the possibilities is that it might have a negative impact on that. So perhaps there are some adjusting mechanisms that you might want to try to be able to keep that in check.’”
Read more about the RESOLVE study on our project page, and find out more about getting involved in research here.
You can also read previous blogs on RESOLVE from LEG members Justine & Ian:
- “I felt like a ‘thing’”: the importance of involving people in their antipsychotic medication journey
- Antipsychotics & weight gain: ‘It’s not me, it’s the medication’
And another from our Public Involvement in Research Manager Annie here: Lived experience priorities for management of antipsychotic-related weight gain
