Cork mum: ‘I didn’t know what I was feeling was abnormal’

Lorraine Egan is never not experiencing some level of pain in her day-to-day life, and until recently she thought that was quite normal.

The 30-year-old mum of one lives with Ehlers-Danlos Syndrome (EDS), a connective tissue disorder which causes over-flexible joints, fragile skin and chronic pain.

She also has fibromyalgia, which is a chronic condition causing widespread musculoskeletal pain, fatigue and sleep disturbances.

Lorraine, from Mallow, says she can never remember a time when she felt completely energised or pain-free.

“Even as a child, I didn’t have much energy and would always have been very cautious and afraid of being hurt. My reactions to getting hurt as well would have been extreme, and because my condition isn’t visible, I’d have been considered dramatic at times,” she said.

Growing up, she wasn’t able to keep up with sports or other typical teen activities, and at times her mental health was impacted.

The exhaustion she experienced, and still lives with, was on another level, and felt like being hit by a bus, and because the pain disrupts her sleep, getting vital rest is hard.

“My pain feels like it’s constantly moving. It could be in my leg one minute, my arm the next. When I’m having a flare up my whole body hurts – wearing clothes hurts, and my body feels so sensitive that even gently brushing up against something or someone would cause me to flinch.”

Despite this, for long periods of time, Lorraine managed: “I’d be relatively fine for a while, then I’d burn out for a week, and that was the cycle for years. But eventually, the periods where I could function fully got shorter and shorter, and it was consistent burnout. I had to leave my job as a massage therapist; I couldn’t go to the gym, nothing. My whole life was really being impacted,” she said.

It was only from talking to her partner that she realised what she was experiencing was far from normal, and she was diagnosed with fibromyalgia in 2021.

It didn’t bring the relief she had hoped for, and her joint pain worsened. It was only after seeing a rheumatoid specialist that she later got her EDS diagnosis, and the pieces of the puzzle started to come together.

“I found out that fibromyalgia is actually brought on by EDS, so finally things starting making a lot more sense,” she said.

Bone dislocations and broken bones are among the main challenges caused by the condition.

“I broke a bone in my back last year, and even when I’m sitting down, a bone can pop in and out. I’ve also a lot of stomach issues as the condition means I’ve got slower digestion so I’ve pretty much got a constant pain in my stomach; I’ve also problems with my teeth and suffer from migraines. I’m never not in some level of pain.”

Initially, Lorraine relied on conventional medicine and painkillers to manage her conditions, but now she manages it mainly through diet and more holistic approaches. There’s been a lot of trial and error over the years.

“If I eat too much sugar or processed food I get a lot of pain and I don’t drink any alcohol. I try to keep up with exercise when I can to keep my joints stable, and I have regular acupuncture. Meditation also helps to regulate my nervous system,” she said.

She no longer drives, for fear of dislocations, and moved from a two-storey home to a bungalow.

“If I went upstairs, often I wouldn’t be able to get back down, so I had no choice but to move. I have to constantly adapt to make life easier,” she said.

Despite all her challenges, Lorraine remains positive.

“I’m lucky that because of what I do for a living, I can now work for myself, which means I can manage my workload. My partner Mike is also really great, and so are my family who live nearby.

“Mentally, though, it can be difficult at times. I’m a very independent person so having to ask for help isn’t easy. It’s hard on my nine-year-old daughter Lily as well sometimes, when I’m too unwell to do things, but mainly she gives me a push to keep on going.

“The one thing I find is so hard to deal with is the loss of control of your own body. Especially when that means letting down the people you love. I think that is one of the hardest things and I know for me I’m very aware that I’m probably not that fun to be around anymore because I am so structured and there is a grief that comes with that. Grieving what is and what could have been.”

Lorraine is sharing her experience as part of the ‘Beyond the Surface’ campaign during September’s Pain Awareness Month.

Up to one in three people in Ireland live with chronic pain — an often invisible and misunderstood condition.

‘Beyond the Surface’ focuses on the hidden struggles of chronic pain and the stigma that surrounds it.

Chronic pain — defined as pain lasting longer than three months — is one of the most prevalent health issues in Ireland, yet it continues to receive limited recognition, understanding and visibility.

Lorraine’s advice for anyone receiving a diagnosis or for living with chronic pain is to strive not to let it become part of your personality.

“For ages I felt like, ‘oh this is who I am now’ but really nearly everyone lives with something, we don’t get to choose, but we can choose not to let it define us.”

She also urges fellow pain sufferers to use their voice.

“For so long, I had no idea that what I was feeling was abnormal, pain wasn’t talked about, and as a result I struggled a bit with my mental health, purely because of the pain. Now I know it doesn’t make me less of a person.”

Christina Donnelly, Executive Director of Chronic Pain Ireland, concluded: “Chronic pain is a heavy burden as often pain is invisible. Stigma adds more weight to that burden, wearing you down, impacting on mental health and wellbeing.

“This campaign aims to bring that pain to the surface — to challenge and end pain stigma, to help promote understanding, and to call for a system that believes and supports people from the start.”

• See www.chronicpain.ie.