“I’ve had to stop so many things in my life… but I’m not prepared to give up music”: The truth about touring with chronic illness

Bundling into the back of a van for days at a time, eating junk food and not having a second to yourself would take its toll on anyone, but especially those living with a chronic illness. We talk to members of Bowling For Soup, As Everything Unfolds, Black Foxxes and Mallavora about the emotional and sometimes embarrassing realities of being a touring band while trying to manage a debilitating condition – and how the industry needs to change…

“I’ve had to stop so many things in my life… but I’m not prepared to give up music”: The truth about touring with chronic illness
Jen Thomas

Touring can be taxing at the best of times – traversing the country (or the world) can take a huge toll on both your mental and physical health. But what happens when you’re dealing with a chronic illness or disability, too?

Bowling For Soup’s Jaret Reddick has been very candid about his mental health over the past few years, opening up about decades of depression and anxiety and his experiences with therapy and medication. However, he has been suffering behind the scenes with his physical health as well, due to debilitating digestive condition ulcerative colitis.

“I was diagnosed when I was around 20 years old. I had to relearn my priorities around going to the bathroom very, very quickly. If you have to go, you have to go now,” he explains, reflecting on how the inflammatory bowel disease has led to some mortifying – and scary – experiences over the years. “You see blood in the toilet, and you think the worst. I’ve had so much worry about, ‘Will I make it to the bathroom in time, will I have an accident?’ It’s not fun.”

Jaret credits the support of his bandmates, crew and loved ones with helping him to achieve the career he loves. They’ve done everything from cleaning toilets and scoping out venues to check for privacy and suitability, to finding clean clothing for him for when things go wrong. All – most importantly – without shame or stigma. “Nobody wants to be a burden,” he says, “but be sure to surround yourself with good people that you trust, that you can count on. It takes the pressure off.

“Back in the van days of touring, we had a whole system in place. We would pull over at whatever place we could, and my guitar tech Charlie would run full-speed into the bathroom first and make sure there was a stall, and if it was dirty, or whatever, he would give it a quick clean so I could just walk right in and sit down. Behind him would come Erik [Chandler, ex-bassist] or Gary [Wiseman, drummer] with a new pair of pants, just in case I didn’t make it.”

It’s not all glamour, this rock’n’roll life.

“One of my one of my claims to fame is I pooped on the infamous ‘throne’ at CBGBs – most people will have seen the photo of the worst toilet in the world,” Jaret shudders at the memory. “There's not even a door, or a stall, and I had to sit on that thing absolutely humiliated while Erik stood shielding me. Honestly, I can’t tell you how many shitty clubs I’ve had a bad experience with. Pun fully intended. Give me a brand-new venue with decent working toilets with a door and seat any day over a heritage dive bar!”

Venues not being up to scratch has also been a big problem for Mallavora, who are set to play Download Festival next week after being crowned winners of The Deal earlier this year.

To prepare for the biggest show of their lives so far, the band have just completed a string of warm-up shows across the UK, at venues that were wheelchair accessible for their fans and suitable for vocalist Jessica Douek, who has the chronic pain disorder fibromyalgia and sometimes uses a walking stick or other mobility aids. Frustratingly, it’s been far easier said than done.

“It’s been a real challenge,” sighs Jess. “We’re a small band and trying to find suitable grassroots venues has been hard. In this country we have so many amazing small venues, but quite often they’re in basements or up really narrow stairs above a pub or something. We then found that with many venues, if there’s accessibility measures in place for the audience, it’s then unsuitable for me or the band with lots of stairs to the dressing room.”

Jessica often worries a lot about ensuring that everyone can come to a show who wants to.

“A song of ours about disability went viral, and we have many disabled fans, and I spend a lot of time thinking of ways to make sure they can come and see us play. It’s the bare minimum, really,” she enthuses.

“We wanted our headline shows to be as accessible as possible, and that’s always going to be a work in progress, but we had to try, in an industry that can be incredibly inaccessible. That can be measures like taking a break mid-way through the set, finding venues where they’ve lowered the height of the bar, making sure there’s seating where people can take a break if they need to… it’s all things that a lot of people don’t think of.”

The myriad of challenges that people suffering with chronic conditions face when on tour is something that Black Foxxes frontman Mark Valentine has been dealing with at great emotional, physical and monetary cost. He has Crohn’s disease and alopecia, and while he's fortunately feeling the best he ever has in his adult life at the moment, the singer has experienced many trials over the years.

“Being in the public eye and having a condition that impacts you so visibly was crushing,” he remembers. “I lost all of my hair, my eyebrows, lashes. My hat became my crutch, and I remember it fell off one night during a gig and I just ran offstage crying. With alopecia many people think it’s not as bad for men to lose their hair, but it was horrendous. It really feels like losing a big part of your identity.”

His changing appearance caused big problems when it came to travelling on tour, too.

“I remember the first time I went into Canada they detained me. I had to go through three different steps of security with people with guns because they didn’t believe I was the person on the passport. That’s traumatising and it’s a massive thing for me anytime I travel anywhere.”

Being the other side of the world when you are reliant on medication also poses another set of problems.

“I’ve been caught out a couple of times while on tour and I’ve been overdue for my infusions – I’ve had to fly back to get my infusion and then fly back to continue the tour. I’ve stayed on tour and missed my drugs and been wildly sick,” he says.

“When we did an American tour I looked up about having treatments out there. To even afford the drug would have cost $1,500-2,000! For me, the hardest part of living with a chronic illness is the management of it, you’re having to be your own PA and organise your dates with a tour, and when to have the drugs.”

Jaret also experienced issues when travelling during the early days of his condition.

”Initially I was having to treat it with enemas, and airport security were not keen on those,” he laughs. ”Everything changed after 9/11 when you couldn't take liquids through anymore. It was humiliating, having them hold up the bottles while I had to explain that it was medicine and it has to go up by butt. ‘Please don’t remove the lid and the lube, because I need that!’ Nowadays I have a pharmacy app with me at all times, and I can click on it, it shows the pill so I can prove that I have a prescription for it.”

And after 30 years as a band, the Bowling For Soup frontman knows it’s inevitable that things will change with age.

“We're getting old, you know! We've we've put our bodies through a lot of stuff. Even stairs can be quite taxing on my knees, I've had three knee operations, and of course, I've put some weight on over the last 10 or 12 years. Touring isn’t the best environment for healthy living.”

Making adjustments while on the road to try to avoid mental or physical burnout is something that Charlie Rolfe from As Everything Unfolds has been learning to deal with. The singer has been undergoing medical investigation and is awaiting a diagnosis, having experienced vision loss and cardiac issues after suffering with a virus on tour, and is now all too aware of the dangers of taking on too much.

“I’m having to learn to say no to a lot of things,” she says. “The pressure to do everything and be everything isn’t coming from anyone else; the rest of my band are brilliant and our fans have been so understanding, but it took me a while to learn that it’s okay to say no.”

It was after a tour in Germany that Charlie lost part of her sight in one eye and has been trying to adapt to a better work/life balance since.

“It can be really hard, especially with things like not being able to come out and meet fans at the merch stand afterwards, because I’m terrified of getting sick and losing my sight again," she explains. “We’re much better now at spacing out our tour dates, and I have a bunk in the back of the van where I can try to sleep as that makes it much easier. It’s about making sure we have a dressing room, that we have space to prepare for a show and it really helps with any anxiety about getting ill again. You feel awkward asking for things but I’m getting better at it, it’s not worth burning out but I love what we do.”

Despite the challenges that Jaret, Jessica, Mark and Charlie have faced and still continue to deal with, it hasn't stopped them loving what they get to do, and all have hope for the future in terms of accessibility and changes being made.

“I've had to stop so many things in my life because they've not been made accessible for me, but music isn't something that I'm prepared to give up,” says Jess, summing up her experience. “I realised that if I wanted to see a change in the industry, I should go about it myself and try and forge change. We’ve got to try, but it shouldn't just be the responsibility of disabled people to make accessibility better.

“The industry should be doing more for disabled artists, disabled fans and disabled professionals in crews and touring parties. Asking everyone in the touring party, ‘Do you have any access needs?’ takes the burden away from disabled people constantly having to disclose things. It’s everyone’s responsibility to make sure people are included.”

“It all comes down to help from friends and doing your research,” Jaret concludes. “Just keep fighting.”

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