Belle and Sebastian's Stuart Murdoch on Patient Advocacy
Hi! My name is Molly Crowther and I’ve been working as a healthcare advocate since 2021. I’m part of a growing community of independent advocates who help patients and their families navigate the US medical system. I’ve been a big fan of Scottish indie rockers Belle and Sebastian since around 2010, and I first saw them live in Berkeley in 2015. Stuart’s story has fascinated me since I watched the Pitchfork documentary about the group’s second album and first mainstream US release, If You’re Feeling Sinister, and his life with ME (myalgic encephalitis).
When Stuart tweeted recently about advocating for yourself as a patient, I jumped at the chance to have a conversation with him. Stuart joined me via Zoom on March 20 from his home in Glasgow. The following interview has been edited for clarity and length.
MC: I’m curious - was there a particular experience that prompted you to post that video the other day? Were you just walking around and thinking?
SM: Actually, that is a good question. Over the past 5 months I’ve had my own bit of a health crisis. It caused me to cancel the Belle and Sebastian tours. Certainly ME was involved, but it’s come out more as a mental health crisis. Things had just sort of fallen off a cliff, and partly the reason was that I’d had a terrible reaction to regular antidepressants. I didn’t realize I was having such a bad reaction. I was lucky because I have a friend who is a psychiatrist who said “This is not good. You need to stop taking these”. I took 4 different medications and had the same reaction, each one leaving me more sick than the one before. I’ve been through a lot and tried to work it out, as I think we all have. In this day and age, we’re not just patients anymore. We’re active partners in healthcare. It feels like the culture in the States is more like when you see a reasonable doctor, you feel a little bit more like you have a partnership. Like you’re working together, like you can have a good conversation. There are people in the NHS in the UK who are like that, and some things have definitely gotten better over the years. But because perhaps the NHS [National Health Service] is government sponsored, things are done very much by the book. Things are sometimes a little bit slower and less adventurous, less progressive.
If you’re interested in what’s happening to you and are trying to get better, like the vast majority of people are, then it’s a foolishness not to involve the patient with what’s going on. I’ve never really spoken about this stuff. I think most people working within the NHS would probably agree with me. It feels like common sense! What is happening with people’s health is so complex. These days, people’s demands are sky high. Now, what is going to meet these demands? It’s not gonna be extra cash. There’s no money tree! There can’t suddenly be two or three times the doctors. We can’t always have private physicians, no matter how much we would like that. So… what? What is going to fill in the gaps in people’s demands for increased health care? It’s partly going to be the patients themselves - the research they’re putting in, the investigating. And their friends. You say there are advocates in the States; we don’t have advocates. At least I never knew about that. It’s interesting to me that there are professional advocates. In the UK we’re talking about friends, partners, families, mothers doing the legwork.
MC: You hear a lot of stories about how patient advocates got into it. Everyone has a story of a relative, or themselves having to learn how to advocate. And then realizing it’s a thing that you can help other people with, too.
How has your experience changed over the past 30 years, having to deal with your own chronic condition? What are the changes in the system that you’ve seen?
SM: Again, that’s a good question. I think with chronic fatigue it’s been glacially slow. It’s a little sidebar condition that just hasn’t kept up with any kind of progress. The funding for ME/CFS [Note: ME symptoms are sometimes referred to as Chronic Fatigue Syndrome outside the UK] is tiny compared to conditions that affect the same number of people. It’s been well documented by the ME associations and the support groups. In Scotland we have this joke whenever there’s an ME demonstration at Scottish Parliament. There’s usually 2 people dressed as panda bears because there’s one more panda bear than there are dedicated ME practitioners. Do you know this one? Apparently there is one ME nurse in all of Scotland for 5 million people, about 50,000 with ME I think. I got it 33 years ago, and I had a tough six years at the start. Then, I had a better decade, and then my health took a tumble again. It was interesting going back to healthcare providers and seeing how little had changed. Their advice hadn’t even changed. I think with something like ME, we’ve always had to sort of fend for ourselves and take alternative routes.
It’s funny - I’m writing a novel just now about the first couple of years of my ME. I had a couple of really bad years, and then the novel starts just from the point where I start to get it together. It’s still sort of the wilderness years. But my friend Michael and I, we did quite a brave thing, foolhardy even! We decided to go to America.
MC: Yeah, when you came to San Francisco, right?
SM: And this actually ended up forming at least half of the novel. This trip to San Francisco, because it was noteworthy for us. It was a big deal, you know. We sold our record collections! Half the reason we came was for the climate, because we were freezing in Glasgow. My body’s heating system didn’t work. I’ve got my hot water bottle here! We were fed up with being cold, and so we thought California was a place to try for the winter.
MC: San Francisco’s maybe not the best for that…
SM: We looked at an atlas that we got for free with some cereal, and it showed world climates and a Mediterranean climate round about Southern California, and it seemed particularly the city of San Diego was well served throughout the year. So it was San Diego that we headed for, and it was just a fluke that we could only get a flight to San Francisco and then get a local flight down to San Diego. Once we looked around San Francisco, I sort of fell in love with that city, so we ended up coming back there. But we spent half the time in San Diego trying to get warm.
The other reason we went to California was that we were interested in ME support groups and finding out more about our condition. This was before the Internet and we presumed California did everything first and did it better and faster. We actually got some really useful information. We went to a group that seemed to have a great understanding of what was going on. There was actually a clinician in the group, which was amazing. And just as a sidebar - my traveling companion, Michael (who had ME as well) met his wife-to-be at the first meeting! Which is a nice part of this story as well.
MC: Oh, wow! So it sounds like (and from knowing a little bit of your history) peer support was a big thing for you. You had other folks that you knew in Glasgow with ME as well, right?
SM: Yeah, we formed our own group, particularly for people our age, because we were near the university. We had quite a healthy group of maybe a dozen people that met fairly regularly. We shared ideas, and we moped and moaned, but generally we had good friends, and if anybody was trying something that was working for them, of course they would spread that information.
That whole time I had a few different GPs [general practitioners]. I could never really complain, because they were always generally supportive. When you look back to the nineties, they actually feel more like halcyon days for general practice, because nowadays you can’t even get an appointment, it’s so difficult.
MC: They rush you in and out.
SM: Yeah, and it’s not their fault. It’s a general squeeze, after the pandemic, and there’s been a right wing government for years that wants the NHS to fail so that they can introduce an American system. There’s no doubt about that. And so back then you did have time to have chats, and they were always supportive. And then, when I did eventually go through a mental health battle as well, which is hardly surprising after years of being not well, I did get to see counselors and got through that. For general stuff, they were always very good. You have to remember that the vast majority of doctors, I mean, surely almost all of them, they want to help! That’s their job. They trained as doctors because they want to help people. They want to heal people, and when they find something that is difficult to heal, it’s a difficult situation for them. They’re only human. And it must be frustrating for them. You have to give them credit, because if there was stuff going on - psychiatric stuff, or just viral stuff or bacterial stuff - were quite quick to step in and say, “Okay, well, I can help you with this, I can help you with that”. It was just the elephant in the room - the ME - that unfortunately they weren’t getting anywhere with.
MC: Can you tell me about a time that you did have to be “pushy” and got somewhere because of it?
SM: You know, the most pushy I have been is in the last 5 months. I almost slightly regret using that word, “pushy”, because I don’t feel that at any point I’ve been unpleasant or unreasonable. I had some real ups and downs in the last 5 months. Obviously, with this severe reaction to these pills I’ve not been in great shape, but I feel that I have managed to remain reasonable… just “dogged”. The situation is starting to get somewhere now. I was pushing to try a pill that is not a regular pill on the NHS. They were being reluctant, but eventually they let me try it. So far, it’s certainly way more successful than the other ones and I’m hoping for good results. What goes without saying, in addition to what I did say in my little clip (and a few people picked this up) was that not everybody is in a situation where they can be as “pushy” as me.
I’m obviously lucky because I can speak up for myself. I’m not shy. I’ve had 30 years practice advocating for ME people, and I’ve got an American wife at my back! She’s ducking and diving, and she doesn’t stand for any nonsense in any regard. She’s used to the American way of doing things - I’m not saying skip a queue. But she’ll find out by legitimate means how to get there, and that helps. But of course, dog eat dog is not the way to run a health system. And I would stress that in this process I have not jumped any queues. I’ve not forced anybody to do anything.
I’ve waited my turn. I’ve just been dogged because I did realize the way that we should be going, and it would be terrific if everybody had the same chance, that people spoke up for them, and noticed things that were wrong with them before they were going to happen, perhaps.
MC: Yeah, I think that’s something we learn as advocates, pretty early on. I don’t know if you know that anecdote about the kid throwing starfish back into the ocean, and it’s like you’ll never be able to throw every starfish back in. But it matters to that one starfish, right? I can’t personally change the whole medical system. But I can help one person navigate the red tape, and it's definitely not about forcing it through or stepping on other people to do it.
SM: Well, that’s it. I mean, that’s a metaphor for life and everything bad that you feel is happening in the world. In any situation, social justice, climate change, medicine. You can help the guy next to you, help the starfish next to you. But the fact is, if everybody was helping the starfish, it would be great times to be a starfish! If everybody was doing it, you know.
MC: Yeah, for sure! Is there advice you would give to patient advocates out there, or people who are newer to having to navigate chronic illness? Or roads that you can think of that you went down that weren’t helpful, or places that you got stuck in dealing with ME, that you wouldn't want other people to have to try?
SM: There’s actually very little that I regret doing. And listening to your own body and working things out. I’m trying different complementary or alternative medicines, which in the States probably a lot of these are much more mainstream. After going through all this business with the pills and ME I’ve ended up with a bit of a depression problem. To be frank with you, it’s understandable. I’ve been under quite a lot of stress, and I think stress can turn into depression eventually. But I feel like I’m probably one of the most motivated depressed people in the UK right now. To me it just becomes a project. I’ve got to, and I want to, get better. I’m determined to get better. This is a pain in the arse! This is the worst I’ve ever had it, so I’m exploring everything and then trying everything once.
I feel like I’m probably one of the most motivated depressed people in the UK right now.
My wife is saying… “You really want to try that? Listen to me, try this!” But I feel that you can trust yourself when you speak to people. They’re not gods. Medical people are not gods. They’re people! Sometimes even the best of them, even the psychiatrists, even the people that are very highly paid, they have great knowledge, some of them have experience. But they’re just going by the seat of their pants sometimes as well. So the idea is that you take from everybody the thing that you think works. You take the good stuff. You might be sitting with a therapist for an hour, and they’re talking, talking, talking, and you’re thinking “That’s a waste of time!” And then right at the end, they’ll say something about starfish that suddenly makes a lot of sense. You take the starfish bit and you run with it. The same goes for all these practitioners, and if it works for you, then it’s probably a good thing, because we’re all different.
This is my experience. I’m talking more about mental health, because you can cut a body open to see what’s going on. But in the brain it’s about talking. It’s about feedback. That's how they're working out what’s going on. They’re not going to cut your brain open, so there’s still a lot of guesswork there, and with ME as well. I’m used to it because it’s a hazy mystery. I did two and a half years with [a clinic] in London. They were all about tackling ME with nutrition and supplements. My practitioner was amazing, and she was like a detective, and I felt like we were detectives together. It was like that movie that I never even saw! The big movie with Tom Hanks and the girl from Amelie… the Dan Brown Book.
MC: Oh, The Da Vinci Code?
SM: I never saw the movie. I never read the book, but it just kind of felt like me and [the practitioner] were detectives trying to track this code of what ME is or what was happening to me. And it was fun, but at the end of the day we only got so far. Then I realized that it was taking up so much time, energy, and money with all these supplements that I needed to just focus on the bigger picture. There were other things going on in my life that were probably holding me back more. So anyway, I’ve been rambling there.
MC: No, that’s really helpful. More generally, at least in the US, we’re entering a phase with long COVID where it’s the early days. There are so many people who are affected by it, but it’s still very early. Trying to figure out what we can actually do for it mirrors a bit of what has gone on with ME as well - especially if you subscribe to the idea that maybe ME is like long mono or long Epstein-Barr.
SM: Sure. Early on, the ME community in the UK offered support to the UK Government in the emerging cases of long COVID (and I think they were pretty squarely ignored at that point). Offering support even just in ways of coping with the shock of having your ‘battery’ go. What many people find, I think, is there’s a shock and a way that you react where the mental and physical become one, and you can get into this negative cycle. If you have a practitioner, a clinician, a friend, somebody knowledgeable who can stop that cycle and get you to a safe place, then you can proceed with your recovery. What I’ve just said is maybe a little bit challenging for some people with long COVID or ME, but it is my distinct belief that if I’d had somebody like that, an advocate, or an ME person who really knew what was going on to give me confidence and explain these symptoms, what is happening with you. It just means you don’t have to have a shock or anxiety at every stage. I think we all at least acknowledge, in any medical condition, that the mental side of things does have an effect. It’s great if you can remain knowledgeable and positive.
MC: Yeah, that’s a big thing for me, especially with folks with chronic illnesses. When you’re approaching the situation as an advocate, the absolute first thing you have to do is believe them, and believe that they know what’s going on with them. I think that's something that is hard within the medical system. For patients to be able to say “No, this is where I was before, and I'm not there anymore” and be believed. Trusting people to know their own baseline and things like that.
SM: That’s huge. Actually, you just pointed that out. That’s the first step, having somebody who feels like a friend or an advocate who believes what is going on and can really steady the ship. It’s such a great help. It’s a shame that back in our day, like 30 years ago, we really felt that the only people that were like that were the other people that had ME, so it was a rocky ship. It was more like a raft that was just tied together and made up of ME people. But we got there. We supported each other.
MC: That’s great. Any last thoughts?
SM: No! I think we’ve done okay. I just hope people can, if they read this, take something positive from it. I want to thank all the health people out there, because we shouldn’t forget that they’re primarily trying to help people. It’s quite an encouraging thing. Somebody said to me the other day, if their friends get down about human nature in general and think that we’re all doomed and that there’s something wrong with humans… they pointed out that in the UK, the biggest employers are the health service, and then the education service, and then maybe transport after that. [Note: we maybe didn’t get the order quite right on that for education and transport but the NHS is by far the biggest employer in the UK!]
MC: All good things!
SM: Yeah, they’re good things. And you know, there’s way more good apples than bad apples. We have to remember.