Hayley Beth, Musician: ‘I’m Fighting Chronic Pain With Music’
Musician Hayley Beth, 30, has been learning to deal with chronic pain since the age of nine. She was diagnosed with post-traumatic stress disorder when she was 16. Music, she says, has been her greatest therapy. We recently met at her home in Perth, Western Australia, on a sunny winter day, to chat about what it’s like to live with chronic pain, her support network, love for making, playing, and performing music, and how she stays hopeful.
What’s going on with your body right now? It’s a number of things. The main thing is a lot of pain; muscle pain and nerve pain. If I touch any area in my body it feels really bruised. So, you know, sometimes wearing certain clothing is too much, even the pressure of having a shower can be too much for me sometimes. But, the fatigue is a huge thing. I take a lot of medication. I take about 30 pills a day, which I hate, but it’s gotten me to a point where I can study and do a little bit of work.
Then there’s the cognitive issues which most people know as brain fog and having a bad memory. Trying to study with that is really hard. I was diagnosed with post-traumatic stress disorder when I was 16. That’s a cyclical thing where depression makes you feel fatigue, and fatigue makes you depressed, and pain makes you tired, and the depression causes more pain and anxiety. It’s hard to know what’s causing what, so it’s a big juggling act.
Did your chronic pain start, when you experienced that traumatic moment in your life? No. I was a sick kid, and the pain started when I was eight or nine. I started dislocating my joints a lot, especially my knees. The fatigue got worse over high school, and I missed a lot of school. The doctors were like, “it’s just growing pains,” but there were a couple of times where I couldn’t walk or shower myself, so I saw a lot of specialists then. I don’t think my parents had the capacity to take it further to figure out what was wrong with me. It’s kind of just gotten gradually worse since I was about nine. I got diagnosed with the mental health stuff when I was 16, and then I got Glandular fever when I was 19.
Do you feel less bruising in your body when you play music? It does for a little while. Because I play guitar, it’s quite a neural position. Sometimes I’m hunched over and contorting my hands a bit. I do get quite a bit of nerve pain in my hands. When I’m playing, I often only play for an hour, and then I’ll be in pain afterwards.
The fact is I’m going to be in pain no matter what I do. I try to pace whatever I’m doing. I have to meter out the level of pain that is going to be the consequence, to sacrifice it, to do something worthwhile. I definitely don’t think about the pain as much while I‘m playing. Sometimes it’s hard playing live. That really takes it out of me, and I need a few days to recover after that.
What does chronic pain look like on the outside? Well people can look completely normal. I know quite a few people with chronic pain. I knew them for a while and later found out that they’ve been in quite severe pain for many years. The only way I knew that was maybe they had to go home early one night. I’ve seen them take medication at a party. But chronic pain is an invisible illness, and there’s no one face of it. It’s completely diverse. For some people, they can never get out of bed. Some people have good and bad days like me.
“…people can look completely normal. But chronic pain is an invisible illness, and there’s no one face of it.”
I recently started a new job, and I didn’t tell them that I have a disability. One, because it didn’t come up, and two, I was scared that they wouldn’t want to hire me, even though that’s probably illegal. I didn’t want to go through all these personal details in order to do my job. Later it came up that I have chronic pain and chronic fatigue, and I could tell they were panicking a bit. I was like “Oh, no it’s fine, as long as I have certain accommodations, it’s not a barrier for me.” I can’t walk for long distances. I can’t sit for a long time. I can’t be in severe heat or cold. I can only work one day a week.
It’s been hard because you tell them once and they don’t listen. Little things like not being able to use the disabled parking bay at my work. I don’t understand what’s with that. It’s not easy to get a disabled parking permit. I don’t just have it because I’m lazy. I just hate that in order to get a job, or go to uni and get the accommodation I need, I have to tell so much personal information. It should be built in. There should be accessibility in the planning stages of when an organization or institution is setup. It could make life a lot easier and less stressful if people had more foresight when they’re setting up a place where a disabled person might be present.
You were bedridden for many years. How did you overcome it? I honestly can’t even remember most of that time. It’s such a blur. I sort of treated it like it was my full-time job. I went to all the doctor appointments and physical therapy, and took all the medication, and I didn’t do anything else except work on my health. That was all I did for three years. Eventually I found a combination of the right doctors; they all communicate with each other, and they all know the other doctor’s treatment plan. It’s a holistic approach.
I guess I got lucky and worked really hard on getting better. It was a big process of trial and error. I was on some awful medications. I eventually got the right combination of medication and therapy and physical therapy that allowed me to slowly get back to do my STAT and start studying one unit at a time, and then two units.
What was motivating you to get out of bed? I think the only thing I did then was music, and I don’t honestly know how, because I can’t remember. Even now it’s something that I do for myself. I don’t have any sort of pressure to achieve any goals with my music. I’m not like some people who play music full-time; their goals are to release an album every year, get radio play, tour nationally or internationally. I’ve done all of that, but I’m at a point where I have to play music. I feel like I can’t not play music. It’s like a therapy for me.
A lot of my music is quite personal; I write something down, and I’m able to process it a bit and move on from whatever I’m writing or quietly playing at home and recording on a crappy four-track cassette recorder that I inherited from my dad. That sort of gives me that sense of self-efficacy and that I’ve been a little bit productive when I haven’t really.
“I feel like I can’t not play music. It’s like a therapy for me.”
You said your music is what you connect with most. I had a bit of a troubled time a few weeks ago where I thought I couldn’t play music anymore. I’m so tired all the time. That’s when I decided to take a break from volunteering with Amnesty International. I have notebooks that I write in, and I usually go through one every six months. The notebook I have now has been the same one for a year-and-a-half. This is since I got deep into volunteering. I told them I’m taking the next year off, so I started writing and recording while I’m on university break. I’ve recorded two songs. I wrote this song that’s about never singing again. It’s like, “I ain’t got another song in me, but I recorded it, so maybe I do.” I don’t know what I’m going to call it.
I thought about what my 14-year-old self would say, if I stopped playing. I can’t. This is going to be a priority because it’s what makes me, me. Even if nobody likes it, I like doing it, and it makes me happy. I think it’s important to do it for yourself and not think about whether people will like it. Because I’ve been playing music in Perth for 10 years, it’s an amazing feeling that people still ask me to play gigs. Sometimes I feel irrelevant; I don’t get a lot of the music that people are playing now, and I don’t know where I fit in. I want to record this album. I’m doing this on my own in the front room on the organ. I’m really relaxed; I get up in the morning and do some guitar parts in my pajamas and take my time. I have all these songs saved up that I’ve never recorded. I’m doing it myself and teaching myself as I go along.
What would your 40-year-old self say about music? I’d like to think that I‘ll still be writing. I think I will. There’s no way I wouldn’t. Even if I’m just singing to my cat, I’ll still be doing it. I don’t even care if I don’t perform in front of people. When I’m 40 maybe I’ll inherit my parents CP-70 Yamaha piano. It used to belong to Joe Cocker. My dad was in a band in the late 70s, early 80s, and Joe Cocker came to Perth and said something like, “this piano is crap. It’s out of tune.” My dad’s keyboard player bought it. It’s so beautiful, and I learned to play on it.
I moved out of the house when I was 16, because of problems I was having at home. It was shit. I was experiencing abuse. It was quite a turbulent household. My sister helped me with the rent, but she was working in the mines, so she was never there. I used to sing all the time, so that’s how I learned. I moved out, and I got into music. It really helped me.
Who’s been supporting you through all of this? Well, I’ve been with my partner Brendan for nearly seven years. He’s been the main person that helps me; there’s been times where he’s had to do a bit of carer role for me when I wasn’t able to walk or do basic self-care stuff.
I have to give him credit because most of the time he has no idea what to say, and I try not to tell him when I’m in pain or when I’m tired. It’s like a broken record, if someone was to say the same thing to you every day, you would get pretty bored. It sounds insensitive. I try to tell him when I’m not tired or feeling okay, rather than, “I’m in pain, I’m so tired.” It’s so repetitive for him.
My mom has been able to help me a little bit with paying for medications — I used to be on a disability support pension but I got cut off, which a lot of people have — so my mom has helped me financially.
The main thing is I have a really good psychologist Jozay, who I’ve been seeing for about eight years. Sometimes when I’m not able to go see Jozay I can imagine exactly what she’s going to say, and I have her voice in my head like, Hayley, what would it be like if you were kinder to yourself. These little phrases that I know she would say to me, and I still have that when I’m over-doing it.
What has Brendan or your mom done specifically to motivate you? The thing with Brendan is that he shows up. He doesn’t treat me like I’m less. He doesn’t get deterred when I’m going through some really unattractive, ugly phases. He will listen to me when I say I’m not coping. He’ll take me to the hospital. Little things like cook dinner and clean up. Things that I don’t have the energy to do.
There are certain things that is the stereotypical things that you want a mom to be like, like nurturing and caring. My mom understands that and she’s very maternal, and she’ll come over and do my dishes. She doesn’t judge me when I do things that are detrimental to my health because she understands that I want to live like a normal person, and if that means pushing myself to my limits and being in bed for a week, or go out with my friends and have a drink, she doesn’t judge me for that.
I think it has been really hard for her, because she’s grown up in a time where people didn’t talk about mental illness, and little things like me saying I want a new medication. She finds that hard to understand how people can take medication at all. She’s kind of had to get used to that, because she knows I’m trying to do what’s best for me.
It’s really hard for people who are close to people with chronic pain. It’s so unpredictable and everyone is so different. No one really understands the origin of it, because there’s not enough research. What triggers pain for me might be different than another person. It’s no doubt that it’s super connected to your emotional state. Anxiety is a really physical process.
“What triggers pain for me might be different than another person. It’s no doubt that it’s super connected to your emotional state.”
What about the people who have turned their backs on you. You said you were cut off from your disability pension. That was really hard. Being on disability was the reason I could take the time to work on my health full time. It’s not a lot of money, but I have so many costs with all of the specialists, all the medications, and just general things. I went through that process of re-applying and appealing and getting treated like I was trying to rort the system, or that I was faking it, and feeling like there was no solution to try and work with the system. It’s just ridiculous.
I learnt all of the little requirements that you need to get disability. It took it out of me. I ended up in the hospital for being quite suicidal and feeling like there was no hope for me. I thought I was going to end up homeless. I worked it out in the end. Fortunately I’m able to work a bit now. That made me feel like I was nothing to them. These people have no empathy at all.
I have lost a lot of friends. I don’t feel like I can be very honest with a lot of people that I see out and about. I don’t want to be a big downer on everyone all the time. This is my life, this is what I live every day. If someone asks how I’m doing I might make something up. I don’t want to ruin the party or something.
Why have you lost friends? They’ll stop calling. Stop inviting me out to things. They feel uncomfortable. They don’t know how to deal with it. I think maybe it’s that they don’t know how to deal with it or know what to say. I don’t really blame them. One thing a lot of people do, when you say I have chronic illness or disabilities, “Oh, I have that too.” They’ll be like, “my back really hurts,” or, “I broke my leg once.” Oh, sorry that happened to you, but that’s not really the same thing.
They have to relate to you, they don’t see that it’s possible that they don’t understand what you’re going through. I’m not asking for reassurance, I’m explaining what is a big part of my life. People will be like, “I got a migraine the other day.” Okay, yep. I don’t want to minimize what people are going through. It’s hard for people to understand.
It’s been helpful having a community of people having similar issues online like support groups. I have friends that I’ve met online from all over the place. I have a friend who lives in Montreal. She’s a jazz singer. She’s got chronic fatigue and chronic pain. One night on Tumblr I was really exhausted and fed up, and I sent her a message asking, “how do you perform and write and be a musician and you’re in pain all the time and you’re exhausted?” She actually wrote a blog post about it and it was really helpful. I keep in touch with her a lot and there’s the fibromyalgia support network. It’s mostly women, and we all give each other advice and we go and have a drink together or meet for coffee. It’s amazing that group has 500 members now in the under 35 group.
At the same time I don’t want to be around a lot of people who are super negative. It’s a fine balance. My resolution this year has been to stop complaining altogether. A lot of people will get together and be like, “I can’t do anything.” There are people out there who are like, “let’s celebrate our wins, and improve our lives with things like accessibility and awareness and activism.”
“There are people out there who are like, ‘let’s celebrate our wins, and improve our lives with things like accessibility and awareness and activism.’”
Do you think if more people speak up, that has the ability to change how disability is granted? What has to happen for that to change? To me, it’s a really big part of people not understanding how to approach chronic pain. They have an image of what a person with chronic pain looks like. Not everybody with chronic pain uses mobility aids. Sometimes I use a cane and sometimes I don’t. Sometimes I can walk a decent distance. Sometimes I can’t walk a few metres.
I don’t think it’s a coincidence that the prevalence of syndromes like fibromyalgia or chronic fatigue syndrome disproportionately affect women. It goes back to a century ago when women were labelled as hysterical, if they felt issues like anxiety or chronic pain. A lot of women will present to a doctor and say, “I’m in a lot of pain all the time,” and the doctor will put them on antidepressants. There needs to be some sort of awareness about what chronic pain is — you don’t need to have had a traumatic accident like a car crash to have chronic pain. This is one thing I find is controversial when you talk to people with chronic pain; people get very defensive when people say, “it’s in your head.”
Pain originates in the brain, so people with chronic pain don’t necessarily have any physical cause for their pain. Sometimes there’s an injury. Sometimes there isn’t. Just because a condition might be psychosomatic, or have mental origin in the brain, doesn’t mean it isn’t any less debilitating or real. Just because someone doesn’t have a physical illness, doesn’t mean their life isn’t severely restricted and isn’t completely disabling. I think there’s this big stigma. Part of it is sexism, and part of it the fact that people with chronic pain don’t look like what a typical person with a disability might look like. There needs to be more education about what disability actually is.
“There needs to be more education about what disability actually is.”
What’s your advice for other people who have chronic pain when they feel really low? When I was super depressed a few years ago, I went to my psychologist, and at the time I was pretty much bedridden for a few years. She told me to do this thing weekly called scheduling pleasurable events. You do one thing that you enjoy whether it’s go outside and sit in the sun and read a book, eat something nice, watch a show. You do one thing and try and be a bit selfish.
People with chronic pain, we like to beat ourselves up all the time. I’m not productive enough. I struggle to study. I can’t get a job. Most people my age have travelled or have kids. Don’t let the guilt take over. Even if you say I’m going to draw for five minutes, once you start doing it you’ll feel like you can do more. If you can’t let your body rest, don’t feel so obsessed with being productive. It’s really damaging. Do something you like, even if it’s having a cup of tea.
I have to exercise or my muscles will get weak, and I’ll be in more pain. So, I tell myself, okay, I’m going to go on an exercise bike for five minutes. But I usually end up doing 30 minutes. It’s like when you get in a pool and you’re really cold, you have to jump in.
How do you stay hopeful? It’s really hard. I used to always be like, this next specialist appointment, this next therapy, this next medication, I’m going to get better. It never happened. When you have a disability or chronic illness you go through the stages of grief. So, it’s like denial and bargaining, and I might get to acceptance, but then I’ll go back to denial. I push myself too hard, because I pretend I don’t have an illness, and then I crash and get really depressed. I take everything a day at a time, and at the moment my study is the most important.