Nina Gilligan on living with fibromyalgia and chronic migraines

Nina Gilligan suffers chronic pain and headaches.

Nina Gilligan is used to people not taking her seriously, especially when talking about the chronic pain she’s endured for a decade. Now, she wants that to change.

The hard-working comedian has lived with an invisible chronic illness for over a decade, but never expected the gaslighting she often experienced in medical settings to extend to her comedy gigs.

“At one of my previews, a GP actually shouted out ‘it’s not real’ when I was talking about my fibromyalgia!” said Nina, who was diagnosed with the condition 10 years ago.

“Fibromyalgia seems to be the in-joke of the medical world. Many GPs either don’t believe in it or don’t know what it is. There’s the same lack of understanding that we had with menopause about 10 years ago. It seems shrouded in bloody mystery!”

Living with fibromyalgia and chronic migraines

For Nina, the long-term and often debilitating pain she has endured due to fibromyalgia is agonisingly real and has been no laughing matter – until now. For the first time, Nina will speak openly about living with fibromyalgia and chronic migraines in her new stand-up show, Goldfish, which she will perform at the Edinburgh Fringe throughout August.

Through her honest and hilarious show, Nina hopes to raise awareness about women struggling to have their experiences taken seriously, from their health to sexual harassment.

“Fibromyalgia is quite a stigmatised illness and I’ve always worried about coming out about my health to the industry, in case it lost me gig opportunities,” admitted Nina. “But now I’m a bit older, I want to raise awareness around it.

“It also helps me tell my other story, about how women often aren’t believed or taken seriously, not just about their health conditions, but also in terms of criminal justice. I’m also telling the story about how I experienced some sexual harassment within the industry, so it’s a wider story about women being taken seriously.

“Now I’m older and my career is more stable, I’m not as worried about what people think about me, and I hope it will impact my career less negatively than if I told this story when I first started.”

Fibromyalgia is a long-term condition that causes widespread pain and has no cure. It also causes extreme fatigue and difficulties with sleep, memory and mood. Chronic migraines, where you get headaches for more than 15 days of the month, are common in people with fibromyalgia and Nina has experienced these for 15 years. Often debilitating, they are followed by a phase that causes nausea and fatigue.

“Fibromyalgia affects women twice as much as men, and we need more awareness, quicker diagnosis and better treatment around it,” said Nina, who is based in Hebden Bridge in West Yorkshire but studied acting in Glasgow and lived in the city, and later Edinburgh, for 15 years.

Fibromyalgia causes joint and muscular pain in Nina’s hips, shoulders, hands and wrists, as well as chronic migraine, extreme fatigue, and irritable bowel syndrome.

“When I was diagnosed, I was told it’s not life-shorting but life-limiting,” said Nina. “Sometimes the pain is manageable but if I have a flare-up of intense pain I often can’t even get out of bed. I’ll be wiped out for days after a flare-up or a migraine, so much of my life is about recovery. It’s impossible to make plans because I never know if my battery will be full, drained, or recharging.”

Comedy helps me cope

Comedy has helped distract Nina from her chronic pain.

“My family and the absolute joy of performing comedy help me cope,” she said. “Fibromyalgia led me to comedy because I was no longer able to hold down a full-time job with the Greater Manchester probation service. Comedy allowed me to set my own schedule and offered flexibility.”

Nina has tried numerous pain management medications over the years as well as CBT, and recently started medical Botox treatments to help ease her migraine pain. Despite regularly being in pain and experiencing migraines in three-day cycles, Nina never lets her medical condition impact her work. She is adamant that she will perform every one of her 24 Fringe shows.

“Nothing will stop me going to a gig unless I’m in a really bad state as comedy is the backbone of my life,” she said. “Adrenaline is a natural painkiller, and if a joke’s embedded in my memory, it’s almost automatic but if I’m doing something new and struggling to find a word, I’m now honest with the audience and often they will help!

“My husband, Mark, will often ambulance me to gigs, where I’m lying down in the back of the car with something over my eyes so I don’t get dazzled by lights and a Diet Coke in one hand. It probably looks like I’m being trafficked! Without that kind of support, I couldn’t do this work.”

Nina’s new show demands women be taken seriously about their health, or sexual harassment at work. Nina has experienced both and reflects this in her show name – the collective term for goldfish is a “troubling”.

Nina and her fellow comedian, Kiri Pritchard-McLean, co-founded Get Off! Live Comedy three years ago to tackle sexual harassment experienced by female comedians. Comedy venues and promoters can sign up to access sexual harassment policies and training, and an independent HR service.

“Kiri had written an interesting article about how there was no HR department in comedy for women who experience sexual harassment during or after comedy gigs. I got in touch with her about my own experiences, which I hadn’t spoken about back then, but have now decided to talk about openly,” said Nina.

“Women need to be taken seriously about whatever it is they want to say. These are our stories and memories, which should be believed and taken seriously.

“We also need to appreciate that speaking out is very difficult. Survivors don’t often speak up unless they feel moved to, because the stakes are high.

“The instances of women survivors in court making up stories are vanishingly rare. It’s important to remember that, as an audience, or someone on the other side of a computer or TV screen, we should always err on the side of believability.

“It all ties into women struggling to be believed. It’s stand-up at the end of the day, so I’m trying to poke fun at it all while also making a serious point.”

Migraine side effects: Problem with losing words had become part of the act

Nina named her show Goldfish partly after a frustrating and lesser-known migraine side effect she regularly experiences called transient aphasia.

“It’s a posh medical term for completely losing a word,” said Nina. “It messes with your word-finding ability. The simplest word will escape me completely. I get this so regularly that it’s how I know I have a migraine coming on!”

As she has found ways to pursue her comedy career around her often-debilitating conditions, Nina has found a way to incorporate transient aphasia into her comedy sets.

She explained: “I do a quiz during the show where I have a list of words that I’ve lost in the past, and I ask the audience to guess what they are based on how I’ve wrongly worded them at the time. For example, wet cupboard is a shower and a box with mouth is a bin!”

Fibromyalgia also has a detrimental effect on Nina’s memory. “I also experience Fibro-fog which affects my short-term memory,” she said. “For example, I knew I had this interview this morning but then 10 minutes ago I completely forgot!

“It’s incredibly frustrating, especially as I used to pride myself on having a good memory. I used to be able to recite Shakespeare plays when I was studying acting. Now, sometimes I’ll be speaking and stop mid-sentence like a rabbit in headlights because I’ve forgot a word.

“I think people often associate having a good memory or being articulate to intelligence and there’s also an ageism factor too.

“Often people will either try to help prompt me or look at me like I’m a complete dafty, and I have to explain to them that I’m not losing my mind, I just have an invisible illness.”

Nina Gilligan performs Goldfish from August 1 -25 (excluding 12) at Just The Tonic Sub-Atomic at the Nucleus. For tickets, visit www.edfringe.com