A life without immunity

Despite this almost pathological need for acceptance and the unique, there are those that still struggle in silence, still being overlooked in the very community that is supposed to be one of the most supportive in the professional sector.

The NHS describes autoimmune diseases as when the body’s natural defence system (immune system) attacks healthy parts of your body. The conditions are not contagious, incurable though manageable, and can be triggered in a variety of ways including in utero, via a viral infection or an environmental factor such as stress. According to The Connect Immune Research, an initiative that brings together researchers from across autoimmune conditions to uncover the commonalities in their work, around four million people in the UK are believed to be living with an autoimmune condition. When those living with one (or several) also happen to musicians, it’s a complicated mix that’s never seemingly been addressed as an enduring matter.

“When I look back, from all of my youth, it's pretty obvious I’ve always had something underlying,” Black Foxxes frontman Mark Holley (pictured below), who has Crohn's disease, tells me. Mark was first diagnosed when he was 21, and put off going to see the doctors about it for years until one Christmas he lost two-stone in three weeks, losing so much blood he thought it was cancer. The doctors ruled that out and settled on Chron’s following a series of tests and a colonoscopy after his stomach was inflamed.

“The issues I have now, they're not really at the top of the list of what you would expect someone with Crohn's disease to have. Loss of appetite, memory loss...it can affect anything like your lungs. Exhaustion is the main thing for me. But early on before diagnosis, it was definitely mass weight loss, and just an inability to do the most mundane tasks, I just couldn't do anything.”

I have Behcet's syndrome, a rare disease that causes inflammation of blood vessels and affects one in 100,000 people. The disease for me manifests in frequent ulcers, sporadic joint pain and bruise-like swelling on my shins, and for others can include migraines and blurred vision, also triggering strokes. Having experienced symptoms since I was a child, I only discovered I had the condition in my early twenties when I was having a particularly bad episode with my symptoms all occurring at the same time. It was only until I searched them together on Google that Behcet's came up, and after seeing nearly a dozen different GPs (all of whom had never heard of the condition before), I was finally referred to a dermatologist and specialist clinic who I now see annually for tests.

Having an autoimmune condition is incredibly frustrating. My condition is poorly understood meaning treatment is scarce, and isn’t severe enough to take steroids which would pacify my overactive immune system (on top of not wanting to be a 20 year-old on immunosuppressants). However, when I’m having an episode which happens monthly and lasts weeks, it gets debilitating to the point where it affects my eating and my mobility, which then has a knock on effect on everything else going on in my life.

Working as a publicist and writer in the music industry is complex. I know I work in an industry that is incredibly accepting of those with differences and those that stand out, but within that, when people give me a forlorn sympathetic look or squeeze on the shoulder when I tell them I’m having a rough time, it makes me incredibly uncomfortable. This is partly because there is nothing that I can really do to “solve” my condition, and also because I’m working in an industry that systematically does not work in my favour.

It’s no secret that the music industry is an often gruelling institution. Late nights, zero hours and ubiquitous need for flexibility and availability in addition to a culture of drink and drugs that is very much still rife, is not just physically taxing, but mentally and emotionally too.

This is something Holley has to deal with alongside his condition, “[As] I’ve known about it for years, it doesn't really affect my life anymore in the physical sense. So I'm technically in remission because of treatment, but I had a really bad night last night, and then I sort of just managed to get on with the day. I've been on infliximab, which is like therapy to be honest. I've been on that for ten years and the effects of that are pretty heavy. It affects your mood, your memory [and] hair loss. Medication keeps me pretty level, but given the job that I have as a musician, it's kind of potluck. I try to be a lot healthier these days than I used to be, but I do have rough patches myself, where I just end up just not really caring and smoking and drinking too much. Those things really have a negative effect on it. But it's just one of those conditions where it's just so random. There's nothing you can really do.”

He continues, “A few years back, when we had major label traffic, it was a lot easier to be able to pull a show, have my own room or something to decompress. But now we're sort of grinding again, and going up the levels, I just have to push through it.” Holley says. “Tomorrow we start 24 days on tour. I'm pretty fucking terrified, it’s the first time since my early 20s that I've done a tour. It’s going to be better than sleeping on basement floors [with] hotels every now and again and airbnbs, but the reality is, people don't really care about your condition at this level if I'm being brutally honest. That's not to say they're not supportive or anything, but if I was to pull out now, it would really hinder the band and the business side of things. It’s really tough.”

Though there are more than a hundred different types of autoimmune diseases, varying from diabetes to rheumatoid arthritis, a factor often shared between them is their unpredictability. The Wytches bassist Dan Rumsey (pictured above) has ankylosing spondylitis, which causes an inflammation of joints but mainly affects his spine. The randomness of the condition is one of the main struggles he faces when it comes into play with his career. “It’s really annoying because you can't really prepare for it,” he tells me. “I have to be injected every two weeks, I get it delivered and I have to do it myself into my stomach or my thigh.

"To be honest, it helped loads at the beginning, but I had an appointment today actually and I was explaining how it wasn't really helping anymore. For the last few months, it's been really bad. If it's like that, I have to think about what I'm going to do that day, and not be able to do it, because it can bring a real drain to my energy. On a good day, I can just be normal, and do whatever I want to do. At the moment it’s not great at all. Even just getting out of bed, [I have to] hold on to the wall and pull myself out.”

Multi-instrumentalist Lins Wilson has chronic fatigue, which has massively impacted her life as a musician. Describing chronic fatigue as “a combination of jetlag, hangover, and the beginning of getting the flu”, the condition manifests for her in both physical and mental challenges. “It means having to say no a lot,” Wilson explains. “It means having to turn down a lot of things. It means having to make and cancel plans. It means not being able to work full time. It can be really challenging, especially as a musician, because being a musician combines all those. It's a physical, mental and emotional experience. Then obviously with touring and being in a studio, it can be so demanding. I've had to completely change my way of working. It’s very difficult because it means having to go against the grain of what's normal in the industry. I can no longer do a studio day where I'm just recording. We can't do gig after gig after gig. I play a gig [now], I have to make sure I'm not doing anything that day or the next day."

Wilson (pictured above) goes on to say that she’s found the physically demanding aspects of being a musician more challenging because of her outgoing personality, having to preserve her energy to perform and rest instead of socialising. Moreover, she says being a woman adds another layer. “It's hard to speak about. It's hard to say, I can't do that, or I can't do this, and it becomes quite negative. I'm not a 20 year old, healthy man. As a woman, I'm [also] spending energy worrying about whether people are judging me for not lifting, because I'm a woman, but actually it's because of chronic fatigue. It's not because I'm not strong.”

Rumsey feels similarly, “I recently did two tours one after the other. So the first one was as a guitar tech for about three weeks. Frustratingly before the tour even started, I had this flare up, and I knew that it was going to be bad. It didn't go away for the whole tour. So, I went in with this thing in my head where I don't want to tell anyone because I don't want anyone to be like ‘oh, no, don't do that. We won't employ you anymore.’ It’s probably not true, but what I’ve made sure I do is if there's any lifting to do, I'll always get someone else to lift with me. It’s just judging what's safe and what's not safe.”

At the time of interview, Wilson is pregnant, and though this has intensified her chronic fatigue, it has made her visible in ways her condition hasn’t. “Since I’ve been pregnant and I've been at a gig, I've actually been treated how I feel like I needed to have been treated. I've started asking for stuff a bit more, more into the habit of telling people in advance about loading or saying, these guys can load in, or if there's any additional hands that'd be really helpful, which has taken me a very, very long time. Being in a rock band, it's very male dominated. I don't know whether it's an internal thing, but not wanting to be judged because I'm a woman and I'm being a diva or I'm being demanding.”

LA-based artist Glume Harlow has Prinzmetal disease, which affects the blood flow that gets to her heart. With several doctors originally telling her she had an anxiety disorder, despite being “the least anxious person”, her diagnosis took a long and complicated seven years.

“I was having these kind of heart attacks every night around 3.30am,” Harlow tells me, with the condition even interfering with daily tasks like driving. “I was just petrified. I was in bed for like a year because my heart wasn't doing well. [I took] so many medications trying to figure out how to stabilise it. After a year, I got on the right medications, they started making my body feel better and my body started to heal a bit. I still have it, it still sucks, but I can play a show. I'm doing my career, which came after the heart disease, which is weird.”

Harlow’s condition has meant that she’s had to completely reconfigure her career, so that she doesn’t put herself at life-threatening risk at any point. Rather than being a challenge, it’s become about adapting. For instance, for a Halloween show, Harlow was supposed to scream at the start of her set, and instead, she got someone else to do it so her blood pressure didn’t rise and she could continue the performance without risk.

“Sometimes people will be weirded out by how I respond to things like, why don't you ever freak out?” she says. “I turned that feature off somehow in my brain. We made a deal that I don't freak out. I do very calm. Anger mustn’t happen, you must go straight to completely surrender, that has to be the immediate reaction or your adrenaline and your cortisol start going off. Then your heart squeezes more and you're actually risking your life. I have to literally just be fucking okay with everything.”

Adapting to a new way of life has, however, brought Harlow (pictured above) )a comforting positivity, “It makes me feel like I can still do my dreams. I went from posting [on social media] a lot on my bad days, but now [that] I have a lot of young people looking up to me who have various health conditions, I want to make sure that what I'm posting is defying and helpful. I still want to give people hope. I want people to know that you still can do what you want to do. I asked my doctor, can I go on tour? He said, it's not going to make your disease more or less dangerous. You can be in just as much trouble sitting on your couch at home with your cat. You might as well do what you love.”

“When you get sick, you get the feeling that everything sucks. I don't want that,” she says earnestly. “I'm so happy at little things that I normally wouldn't notice. I'm just so fucking stoked about like, the weather, that it’s nice looking out. Stop and smell the roses type mentality. But it makes my career really hard. I don't mind saying that in an interview, but I don't necessarily want to pound that in the people's head at every post that I do. On a regular basis, I want to make people feel hope, and I want people to feel excited about my art. I don't want to make people feel hopeless, because to do music, [it's] really hard. It's like buckle up, it's gonna be interesting, everything's gonna be weird to navigate.”

She continues, “I can't go on high elevations. They’re like, 'do this thing in Paris,' and I'm like, ‘an airplane, I haven't tried that!’ I know they pressurise the cabin, but they don't pressurise it enough for someone with heart disease, but I'm not going to not go to Paris if I’m invited to Paris. I will risk my life to go to a Chanel show. Like is this something that I would have dreamed about when I was a little girl? Yes, I'm just gonna fucking do it.”

Not only does having an autoimmune condition as a musician refigure the practical aspects of work, but it can reconfigure the creative aspects of it too, offering idiosyncrasy that wouldn’t exist otherwise. Wilson - who is both a cellist, and a vocalist and guitarist for the band Magick Mountain - has utilised her condition in both projects. For her band, it’s made her reassess the success trajectory, becoming a musician at a slower and much more DIY pace which hasn’t just been a necessity but an inspiration too.

She continues: “With the cello, it’s been a creative inspiration because I managed to get funding from Arts Council. I wrote an album last year, and having been through a chronic fatigue programme, and all the experiences that I've had learning about mind body health [and] learning about that as a holistic thing, I [wrote] cello music that explored sound healing, how actual sound affects your mind and body in terms of frequencies. It’s turned into an album that can help people relax or can help people express whatever it is that is beneficial.”

The album is also inspired by leaving as well as healing. “I lost my dad as a teenager, and 20 years later, I realise I probably haven't really dealt with that properly. I’m always trying to use that experience of songwriting, combined with looking at the science of sound and healing, and create an album that explores and releases, which has been a really interesting process.”

“The one thing I really do love about it, is it really does make you live everyday for every day." - Mark Holley

Mark Holley has also been inspired by his condition, saying that he wouldn’t have over half the things to write about over the years if it wasn’t for Crohn’s. “The one thing I really do love about it, is it really does make you live everyday for every day,” explains. “I know I have never not travelled to a certain place because I've seen in hospitals the reality of what can happen at any stage. I know that sounds heavy, [but] I've had a lot of friends that have serious conditions and they live their life, because you don’t know what might happen the next day. It’s very spontaneous, fun and adventurous. It’s easy to get bogged down with it sometimes. You’re always dealing with an underlying level of unhealthiness. So when you can get on top of that naturally, it's a real high.”

Having an autoimmune condition often feels like you’re the only one fighting your battle, but there are always ways to fight back and adapt. That also means there are countless ways in which the wider music industry can easily help and support those living with autoimmune conditions.

Wilson feels the pandemic made people realise what it's like to be restricted, as well as what it’s like to feel like you’re missing out. She hopes that live streaming gigs which were in place of live shows being cancelled, won’t just be a pandemic niche but a permanent option for those unable to leave their homes. She adds: “I think some really basic stuff [like] creating accessible spaces, which is a very obvious thing, [but] people just think about people in wheelchairs, which is very important, but you need to think about the other conditions. I know this is difficult because it's actual building stuff, but it can be really challenging not having a toilet or a dressing room on the same floor. Having to go up and down stairs with mobility or energy issues has stopped me going to some gigs that I've wanted to go to.”

She also wants to see more holistic support for artists. “Ask them what they need - I think that should be part of contracts, individual support [and] mental health support, because sometimes there's just so many ongoing issues, whether it's chronic conditions, mental health, substance abuse…people need to realise that. That is one of the crucial things that is holding back the industry, it's holding back the artists from what they can and want to do. It's fucking up the music industry's economy if people can't do stuff and its harder to live.”

Rather than focusing on what those with long term conditions struggle with, Glume Harlow believes the industry should be focusing on and taking advantage of the skills they have always had: “We have to acknowledge that we'd have the internet now. And there's ways to monetize everything that way,” She says. “My label said I probably have more to say, and after going through what I did, I definitely did. The entertainment industry could take a look at not being so ablest, like, oh, but can she dance? No, but she can write incredible songs. So make money off of that. You'll still get money from sales and streaming, put it out on vinyl, put it out on cassette. Figure out ways to monetize music for the people who can’t just be on tour. Because sick people can shoot video, and edit pretty fast. You're the wonder kid who has this crazy thing. Don’t change plans. Just figure out how it's going to be different.”