“I’m essentially living and timed by three pills”: Leeds DJ talks living with an invisible illness

3:12pm

Niamh Ingram a DJ, who regularly appears at The Boiler Room and Wire in Leeds, as well as a weekend editor at the the world's biggest dance music and clubbing magazine, Mixmag, speaks out about what it's like to live with a long-term, chronic illness.

Niamh, 22, suffers from Ehlers Danlos Syndrome (EDS) and is also undergoing a diagnosis for ongoing neurological struggles which leave her feeling breathless, seeing black spots, and prone to collapsing. Both conditions, which affect her everyday life, leaves the Leeds-based creative juggling her medication in a bid to carry on working.

She says: “I take my latest medication three times a day - at 9am, 3pm, 9pm - but, it wears off after six to seven hours. A couple of weeks ago, I played a closing slot at Wire - by 3am my medication was wearing off. I have to shift my entire day to when I take my medication. It's so much more disruptive because I'm essentially living and timed by three pills. You’re kind of dictated by a little white pill.”

Alongside living with Ehlers Danlos Syndrome, Niamh is also battling against a yet to be diagnosed condition, which is believed to be a form of dysautonomia, a suspected post tachycardia syndrome (PoTS), that causes Niamh's heart rate to increase very quickly, during everyday activities, including getting up or lying down.

Niamh, who is self-employed, says: “Whether it’s DJ'ing or journalism, I don't want someone to think ‘we’re going to commission her for this but she might not be able to make her deadline because she might have a flare up’ even though I've never missed a deadline and I never will - that fear that they could find someone else is always there.”

Niamh, who is also the creator and host of the podcast Belta Media, which features interviews with some of the North's most famous DJ's, began suffering with her latest health issues after she contracted COVID in 2020. She became increasingly ill and began suffering from high blood pressure, a high heart rate, and breathlessness. “I would be having episodes, setting off all the monitors I was wearing and I wouldn’t know why,” she says.

Her GP prescribed medication, which helped for about 18 months, but in February 2023 she started experiencing mini episodes, where she’d be out of breath, feel woozy, and see black spots in her vision. “I'd sweat through layers and my clothes would be sticking to me. You know when it’s not right.”

In September 2023 the Leeds-based DJ suffered a particular frightening episode where she started feeling out of breath, projectile vomiting and finally collapsed. She was referred back to the cardiology unit in the North East but she didn't receive an appointment until the February this year at a cardio rhythm clinic, where she is now in the process of receiving a diagnosis. She says: “I was essentially told, in a very very patronising, condescending tone, that because I was 19 I’d grow out of it. When I asked ‘how should I deal with this?’ I was told ‘you’ll find out your own way’ and even though test results came back showing my heart rate going dangerously high, they said ‘if you look at it, it balances itself out and looks okay’ even though I was still having these episodes. I was very upset. It was quite an intense experience.

"To basically be told ‘you're too young to have anything wrong with you, you'll grow out of it’ is such a big thing and I know it's because there's such a  big pressure on the NHS at the minute to decrease wait times but I do see people and their health concerns being overlooked. It really really knocked me. It's beyond frustrating and I think because we are young and we are women, the cards aren't exactly stacked in our favour." 

Having neurological problems is challenging enough for sufferers but when those conditions aren't physically visible, Niamh believes it exasperates how someone feels. “It's very frustrating the amount of times someone has said ‘but you don’t look sick, you don't look poorly’ but I am. If I’m on a bus, I sit in a priority seat and people look and see that I’m a girl that dresses stereotypically feminine. I usually have a full face of makeup, big hoops, like you look at me, sat in that seat, and think, what’s she doing? It's a difficult one because I don't want to be looked at or defined by my medical condition - what some might call a disability."

Niamh has suffered from Ehlers Danlos Syndrome, a group of rare inherited conditions that affect connective tissue, her whole life, but was only diagnosed when she was 14. EDS has affected Niamh's everyday life. She suffers from joint dislocations, chronic pain and fatigue, and just going on an 'average' night out requires a plan and is 'significantly more exhausting' for her. She says: "It's a difficult one because I don't want to be looked at or defined by my medical condition. I don’t particularly want to know that I’ve developed this new neurological cardiac situation, but equally, I want people to be aware of it, because my body doesn't necessarily work in the same way as the standard person.”

Niamh is unsure how this latest condition will affect her in the long term, but her next steps are to trial a new medication and is awaiting a Tilt Table Test.  She says: “Obviously it’s a lot, and I'm releasing this now, actually having spoken to people about it last week, it’s actually quite a big deal and I’ve always minimised it a lot. I’m at a place now where I have people around me who understand me. I feel confident in saying how I actually genuinely feel."

Info box

This can happen during everyday activities, as small as getting up or lying down. The condition can improve with lifestyle changes, but usually medication is needed. Symptoms of PoTS include dizziness, fainting, chest pain, shortness of breath, or shaking and sweating. Symptoms can worsen when feeling hot, eating, not drinking enough, exercise, or during your period.