Img credit Emilien Durand
As May marks Lyme Disease Awareness Month, a filmmaker from Mornington is hoping her new film will help shine a light on the reality of living with a misunderstood and often invisible illness.
Katie Joan Maguire has been living with Lyme Disease since she was 21 and has now turned her experience into a film called Warrior, which tells the story of a young woman struggling to be heard as her health deteriorates.
Last year, a successful GoFundMe campaign helped raise funds to complete the project and Katie is now hoping to bring the film to festivals while also raising awareness about the condition.
Katie’s illness began the day after her 21st birthday.
“The day after my 21st Birthday I woke up with a stiff neck, swollen glands and flu like symptoms. I figured it was from partying,” she said.
However, she had broken her wrist around six weeks earlier and later learned the injury may have triggered an illness already in her system.
“From that day that I got sick, I never fully got better.”
What followed was more than a decade of unexplained symptoms including chronic infections, severe fatigue, chronic pain and neurological issues.
“I would get sinus infections, kidney infections, ear, throat, chest actually pretty much all types. This went on for about 18 months solid, at one point I had 13 antibiotics in an 11 month period.”
When she questioned one doctor about the constant infections, she was told she was “just susceptible”.
“I am not blaming anyone, but there was clearly a lack of understanding and/or awareness, even within the medical community, of this infectious disease and how it can present.”
Over time, her symptoms worsened and eventually left her barely able to walk.
“It kind of happened over the course of about six months. First when the joint pain in my lower back was that bad I couldn’t walk at all, was in a wheelchair in hospital for 2 days and then when the neurological symptoms of twitching started.”
Katie says much of those years now feel like a blur of illness, setbacks and trying to continue living normally.
“I was often surrounded by people who either didn’t know or didn’t want to know what was going on with me. Most of all though, I started to give up on myself.”
Eventually she reached a point where she simply accepted that this might be her reality.
“I reached a point about 4-5 years in where I just thought ‘right, this is just the way I am and I have to get on with it’.”
Her diagnosis finally came after her late grandmother Joan Maguire and aunt Teresa Kelly watched an RTÉ documentary called Living with Lyme and urged her to see a specialist.
“My Nanna called me and said ‘you need to make an appointment with this consultant, I’m telling you, you have Lyme Disease’.”
Initially sceptical, Katie eventually attended the appointment and was clinically diagnosed before later testing positive for three strains of Lyme Disease and two other tick borne infections after further testing.
She credits the organisation Tick Talk with helping guide her through that process.
“They were there for me to offer advice on how to get my first appointment and where to get the sufficient bloods done. They also had a community where I could openly discuss what I was going through and meet others in similar situations.”
Katie’s experience eventually became the inspiration behind Warrior.
The film follows Jenny, a young woman whose life is slowly dismantled by a misunderstood illness as she struggles through years of being unheard and misdiagnosed.
Siobhan Dunne as Jenny in the film
“With Warrior I just had a part of a scene pop into my head and it started there. Once I started writing, I couldn’t stop, I felt compelled to tell the story.”
As work on the film progressed, more and more people reached out sharing similar experiences.
“Those stories and experiences kept us going throughout the lengthy two year process getting the film from page to screen.”
Katie says the film is deeply personal and hopes it encourages people to listen more carefully to those living with invisible illnesses.
“If you are faced with someone who is telling you they are suffering but you can’t see their illness, keep an open mind.”
She also hopes people currently struggling with similar conditions take comfort from the film’s message.
“If you’re in Jenny’s shoes right now, you are not alone.”
Katie is now hoping Warrior will reach a wider audience through film festivals while helping create more awareness and understanding around Lyme Disease and the impact it can have on people’s lives.
