A member of the Lived Experience Group (LEG) for the RESOLVE study shares his experiences on medication and weight gain, and advice for clinicians going forward.
RESOLVE LEG member Ian used to run a gym but when he was diagnosed with bipolar disorder he was put on medication, which he believes has caused him to put on a significant amount of weight, which he’s struggling to get rid of.
“I’ve exhausted my psychiatrist with things to do,” he said.
“I cycle, I walk, I go to the gym. Now because of some interventions from the trial, I’ve changed my diet, but my weight is not changing at all.”
The study, which is led by Aston University, is hoping to find non-pharmacological solutions to this type of weight gain – for example, exercise and healthy eating – which does appear to be different from normal weight gain, with the LEG reporting increased appetite and cravings since going on the medication.
However, Ian says that, as well as the potential benefits research into the topic might bring, getting involved in research has helped him feel less alone, increased his awareness of side effects, and let him learn from his peers.
I've made changes after every meeting thinking, ‘yeah, that's a good idea - what you've said is quite important’. I've gone away and reflected on it. It takes time for me to process information because of my bipolar, so I think and reflect a lot.
‘I’ve made changes after every LEG meeting’
When asked what impact the study has had on him Ian said: “Hearing other people’s experience of medication and weight gain and knowing that I’m not alone.”
“It’s not me putting on weight, it’s the medication that’s making me put on weight. I have to take the medication to stay healthy, so it’s made me more aware of antipsychotics and weight gain. I’ve adjusted my diet. I eat salad two times a week, which I hate, but I know I have to do it.
“And as I get older, I’m finding my joints creakier and creakier and wanting to walk less and less. One of the side effects of long-term use of lithium is your gait, your walking becomes more difficult. I can still walk, but I walk slower than everybody else. And I’m very mindful of that, but I will still walk instead of catching the bus if I can.
“I’m working really hard, and this is just giving me like a catalyst to try harder. So every time I see, a message from [McPin] I think, ‘ah, how many bars of chocolate have I eaten in this week?’.
“I’ve made changes after every [LEG] meeting thinking, ‘yeah, that’s a good idea – what you’ve said is quite important’. I’ve gone away and reflected on it. It takes time for me to process information because of my bipolar, so I think and reflect a lot.
“I’m learning from my peers and what they’ve tried and what they’ve done and what they’ve succeeded in. I’ve stolen their ideas and tried to bring it into my own life.”
It was a big decision to go on to lithium, but the antipsychotic was ‘oh just take that and that will help your brain process information better’ and that was basically it. But I was under section at the time, so I had no choice.
This peer support has been vital for Ian, who wishes he’d had more knowledge from his healthcare providers when he was first put on the medication, which he was told would help stabilise his mood.
“I said, ‘great, that’s fabulous, thank you very much’. But no one mentioned to me that you’d put on weight,” he said.
“I’m on lithium as well…it was a big decision to go on to lithium, but the antipsychotic was ‘oh just take that and that will help your brain process information better’ and that was basically it. But I was under section at the time, so I had no choice.”
‘I would’ve changed my diet immediately’
Ian believes that if he was told about the side effects from the start, he could have made lifestyle changes sooner.
“I look back and think, if I knew what I knew then I would’ve changed my diet immediately, and bought the gym immediately.
“I must stay on these medications but I wish I knew what they would do to my body. To be pre-warned is to be pre-armed.”
However, he says this must be more than just the information leaflet that comes with the medication – “because nobody reads that”. Instead, he wants people to be told face-to-face by their psychiatrists ‘this is the benefit of the medication, these are the things you need to watch out for’.
“I didn’t get that until I was put on lithium, until I was out of hospital, and then more information came to me. But by then it was too late, I was already mandatory on these medications.”
I thought it was a government plot to test the drug. I was that deluded and hypermanic that I knew I had to take this medication, but I didn't know why. So, when I became more lucid...it should have been repeated again and again and again.
Repeat the side effects ‘again and again and again’
Like LEG member Justine, Ian believes it’s about being told more than once.
“When I first put on the medication, there was too much going on in my head and I wouldn’t have retained that information,” he said.
“I needed to be told once, twice, three times, four times, five times. However, many times that message needs to get through that this will damage your body, it will affect your brain chemistry, it will block the signal that says you’re full to your brain, so you keep eating.”
With this in mind, Ian’s advice to clinicians is to explain why you are giving the medication, the benefits of taking the medication and the side effects that will come with medication.
“And I would repeat that all throughout, because when I was sectioned, when I was first put on [the medication], I thought it was a government plot to test the drug.
“I was that deluded and hypermanic that I knew I had to take this medication, but I didn’t know why I was taking it. So, when I became more lucid and more amenable to what was going on around me, it should have been repeated again and again and again.”
The importance of a good psychiatrist-patient relationship
For Ian, consistent support from his psychiatrist, who he’s been with for 16 years, has made a big difference to his life.
“I want to thank my psychiatrist because that continuity of care has made us very close. The rapport we have with each other is very good, and she will listen intently to what I have to say and respond promptly to my concerns – and sometimes demands – from her.
“Nothing is too much effort for her. I’ve attempted suicide before so, without her, I wouldn’t be here. She saved my life in an indirect way.
“I also thank the NHS for spending millions and millions of pounds on me to get me to the place I am today.”
Read more about the RESOLVE study on our project page, and find out more about getting involved in research here.
You can also read blogs from RESOLVE LEG members Justine and Julian here:
- “I felt like a ‘thing’”: the importance of involving people in their antipsychotic medication journey
- Antipsychotic medication: “The intersection of mental health, psychosis & weight is a triple whammy”
And another from our Public Involvement in Research Manager Annie here: Lived experience priorities for management of antipsychotic-related weight gain
