Living with fibromyalgia: When lockdown has no end date

6:24 pm on 13 May 2020

By Louise Thornley*

The week of 12 May marks international awareness for ME and fibromyalgia. What's life like for the tens of thousands of New Zealanders who live with these lockdown-inducing illnesses?

woman sitting on bed in room with light from window (abuse concept)

Photo: 123RF

Now that alert level two is in sight, for most people the lockdown will end. But for a large subset who experience disability or chronic health conditions, there isn't an end date - lockdown is long-term.

Myalgic encephalomyelitis (ME/CFS) and fibromyalgia have complicated medical names, but so far lack effective treatments.

On 12 May each year millions of people mark International Awareness for these conditions and the #MillionsMissing campaign, featured in Jennifer Brea's powerful documentary about ME. This date was chosen to remember Florence Nightingale's birthday, the famous British nurse born 200 years ago yesterday. She became mostly bedbound with a 25-year illness. Some doctors and medical historians suspect Nightingale suffered from ME or fibromyalgia.

ME and fibromyalgia are distinct, but share some symptoms. It's common to have both diagnoses. People with these life-altering illnesses experience profound fatigue, pain, unrefreshing sleep and cognitive (memory or thought) difficulties. Post Exertional Malaise (PEM) is the 'hallmark' symptom of ME, where even minimal exertion can produce a severe worsening of symptoms.

I live with fibromyalgia, eventually diagnosed by a rheumatologist in 2018 after eight years of episodic unexplained pain, fatigue and other symptoms. Sadly, a long diagnosis time is not uncommon.

These conditions have a broad spectrum of severity, ranging from mild to severe. One-quarter of people with ME are assessed as severe, meaning they are either house-bound or bed-bound, often for many years or decades.

In ME and fibromyalgia, our cells are no longer producing energy in the usual way. It's like when a car is nearly out of fuel and isn't running as well as usual. In severe cases, it ends up empty. A crash or flare-up of symptoms can last days, weeks or months.

For many of us with ME or fibromyalgia, lockdown is long-term with no end date.

Since we've already had to get used to uncertainty and being restricted, the transition to Covid-19 lockdown was probably smoother for us. We know how to adjust to being home-based, to give up our usual activities, to see less of friends and family.

We know what it's like to feel a loss of control. We know what chronic grief is like, as we're all too familiar with grieving over what we've lost.

But our lockdown didn't involve daily runs, long bike rides, baking marathons or home renovations. Our days are often spent dealing with a barrage of symptoms. We don't have the energy to pick up extra tasks, sometimes there's not enough energy to even phone a friend.

In Aotearoa we lack current prevalence data. Conservatively, if we group the two conditions together, it's estimated to be at least the population of Napier - more than 60,000 people.

The advocacy group M.E. Awareness NZ is currently surveying people with ME to investigate what it's like living with the illness. So far more than 160 people have completed the online survey (it's still open). It's a small number, but enough to draw some early results:

Levels of social isolation are shocking: Almost no one (just 0.6 percent) reports they can participate fully in society. About 45 percent say they can only very occasionally participate, and a further 36 percent say they have to moderate their participation in society.

Health care is lacking: Nearly three-quarters (73 percent) rate health services as poor or very poor in supporting them with ME. A large minority (39 percent) say they don't have a doctor who they see regularly about their condition. Only 29 percent rate their doctor's understanding of ME as good or excellent.

Unemployment is common: A large proportion (63 percent) report they're not in any paid work and 20 percent work fewer than 15 hours per week. Only 7.5 percent work more than 30 hours per week.

Incomes are very low: Nearly 40 percent say they earn less than $15,000 before tax. Thirty-six percent report earning between $15,000 and $24,999. Just over half (52 percent) feel their level of income isn't adequate to live a life with dignity.

Three changes would make life easier for people with ME and fibromyalgia:

  • Better awareness among health practitioners so that all doctors (GPs and specialists) understand how to diagnose and manage these conditions. In April 2020, excellent in-depth evidence-based information on ME was published for GPs in the New Zealand Doctor, by Dr Cathy Stephenson and Rose Silvester. This should be widely promoted for training and professional development for all doctors and other health practitioners.
  • Easy access to telehealth and phone/video consultations so people can access health services from home - the lockdown experience has shown it's feasible to allow remote consultations.
  • Expanded availability of flexible, part-time work from home - again, the lockdown suggests this is an effective, productive option for many people and organisations.

In 2020, these conditions remain misunderstood and under-researched. In the late 1800s, though often bedridden, Nightingale was a pioneer in public health advocacy and statistical work, gathering data on health care and writing influential letters from her bed. Historical researchers call attention to her advocacy for the contemporary idea that healthcare is a human right.

Nightingale would be shocked at the state of healthcare and support for people with ME and fibromyalgia today. She'd be a passionate supporter of the International Awareness week, protesting with the #MillionsMissing campaign.

Healthcare is a human right. At present, too many New Zealanders - the size of a whole city - are underserved by our health system.

Two hundred years since the birth of Florence Nightingale, surely it's now time for change.

If you live with ME, or care for someone who does, please fill in the M.E. Awareness NZ survey.

*Louise Thornley researches and writes on public health topics. She works part-time for RNZ coordinating book reviews and other production tasks for Nine to Noon

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