Mother and daughter consumed by 'invisible illness'

Mother Luana'elizabeth Cunningham, left, and daughter Ameera Grey want people to understand what it is like living with an invisible illness called fibromyalgia.

By Cloe Willetts

Imagine having an illness that consumed your daily life, but was invisible to the people around you.

Fibromyalgia, a condition that predominantly affects women, strikes 2 per cent of the New Zealand population, according to Arthritis New Zealand.

Otaki's Liza Jones is one of them.

The mother of two was diagnosed nine years ago with the long-term condition, which is characterised by symptoms of widespread muscle and joint pain, stiffness and fatigue.

She is just one of a collection of local women who want people to understand what it means to live with fibromyalgia.

"I'm not just being lazy," said Liza, whose symptoms include extreme pain, fatigue, inability to use her limbs, collapsing and mental fog.

"If I need to rest, I need to rest.

"I might look healthy but sometimes I'm an invalid."

Like ex-Kapiti College student Chelsea Drury, 19, Liza's symptoms are triggered by stress and diet.

"Sometimes I just have to stop and rest in bed for half a day, which isn't easy with kids.

"Diet helps and I consume very little sugar and have no caffeine.

"But it's always there, which is so tiring."

Chelsea, who is studying commerce at Victoria University, Wellington, was diagnosed at 14, a year after her symptoms emerged.

"During a dance class, I was accidentally kicked in the head leading to a concussion, and for a few hours I lost my memory of the last five months of my life," Chelsea said.

"From the day of my concussion to now, I experience a dull headache 24/7."

Fibromyalgia can also emerge after a physical trauma, including an injury, infection, or illness.

"At 14, the rest of my fibromyalgia symptoms kicked in, including extreme fatigue, a sensitive body, a constant ache in my face, weird shooting pains down my forearms and intense period pains, to the point I'd vomit whenever I had it."

At her worst, the pain was so bad she was bedridden for a week.

"What makes it worse is you don't look physically sick, so sometimes it's hard for people to feel overly sympathetic or understanding."

Most commonly developed between the ages of 25 and 55, fibromyalgia is more likely to develop if a relative has the condition, some professionals believe.

This is the case for Otaki mother and daughter Luana'elizabeth Cunningham and Ameera Grey.

Luana'elizabeth was diagnosed in 2016, while her daughter Ameera, 26, was diagnosed in March this year.

"I want people to know it's a real thing - that it's an invisible illness," said Luana'elizabeth, who lives in severe daily pain.

"I changed doctors until eventually, the right one gave me a diagnosis.

"For so many years I was told it was all in my head, and I started to believe I was a hypochondriac.

"I guess I just want people to understand, and to not judge because I can't go somewhere or do something."

For the past few weeks, Ameera, a mother of three, experienced an ongoing migraine, along with extremely sore wrists "to the point I couldn't cut vegetables for dinner or pick up the jug to make a coffee".

"I feel exhausted all the time and my memory is like a sieve," Ameera said.

"Other than doing my best to keep warm, I'm learning how to manage symptoms as painkillers often make the migraines worse."

Fibromyalgia, also identified as soft tissue rheumatism, commonly occurs with inflammatory diseases such as rheumatoid arthritis and systemic lupus erythematosus.

As an eyelash technician, the pain in Ameera's wrists and hands affects how much she can work, and whether or not she can pick up her toddler.

"There are so many invisible illnesses that need more understanding.

"Just because no one can see the physical side of it, doesn't mean it's not there."

For fibromyalgia support or information visit www.facebook.com/SupportFibromyalgiaAwareness/