‘Lost my entire life’: How it feels living with chronic fatigue, pain

Inspiring women who live with chronic fatigue and pain syndromes have opened up about their health journeys, the struggles they have faced and the heartbreaking sacrifices made since receiving their diagnoses.

Theresa Clark (left) and Lyn Wilson are Toowoomba members of the ME/CFS/FM Support Association Queensland. Picture: Kevin Farmer

When Lyn Wilson and Theresa Clark were diagnosed with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), they were relieved their debilitating symptoms had finally been acknowledged.

Living on a farm in Gatton in the 90s, Ms Wilson developed an allergic reaction to chemicals being sprayed nearby and became bed-bound with complete exhaustion and was hospitalised for severe dehydration.

Yet it still took Ms Wilson 16 months to receive her diagnosis.

“I saw a neurologist, and he told me I was unfit, overweight, and all I needed to do was join an aerobics class,” Ms Wilson said.

“When he said that I started thinking ‘is this all my head?’ but it wasn’t … I wanted to feel normal again but never did.”

Lyn Wilson is a Toowoomba member of ME/CFS/FM Support Association Queensland. Picture: Kevin Farmer

With symptoms similar to Multiple Sclerosis and Lupus, including a rash all over her body, a different doctor and diagnostic specialist revealed it was ME as a result of a chemical reaction.

“The specialist told me I needed to get away from the farm because it was killing me,” Ms Wilson said.

“He was telling me how disabling the condition was and couldn’t understand why I had a big grin on my face, but I was just so relieved to finally receive an answer.”

While ME/CFS can affect anyone, nearly 80 per cent of people diagnosed are female with 250,000 Australians currently living with the condition, according to Emerge Australia.

The chronic condition affects the immune and central nervous systems with research indicting it is caused by viruses, infections, environmental toxins, physical trauma and stress.

Symptoms can be so severe that 25 per cent of sufferers are bed-bound as a result.

New research from Griffith University has also revealed long Covid and both CFS and ME can have similar effects on brain structure.

Reports showed 13 to 58 per cent of long Covid patients experienced similar symptoms to the conditions including brain fog, fatigue, pain, and autonomic dysfunction.

Four years later, Ms Wilson was also diagnosed with Fibromyalgia Syndrome – a chronic condition which causes widespread musculoskeletal pain, fatigue and cognitive issues.

Ms Clark was diagnosed with CFS in her early 30s – at a prime moment in her life, when she was excelling in a management role.

Struggling with burn out, eczema brought on by stress and chronic anxiety and depression, within 12 months Ms Clark could not stay awake for more than 15 minutes at a time.

Test results revealed Ms Clark’s condition had been caused by Cytomegalovirus and epstein reactivated glandular fever and was later also diagnosed with FM.

Unable to work, she was forced to quit her job, sell her unit and move in with her parents – a sudden lifestyle change which left Ms Clark feeling suicidal.

“I was a fit, active person with a Type A personality, who loved to work, run and walk my two dogs, so when (I became unwell) I lost my entire life,” Ms Clark said.

“You grieve the loss of what your life used to be, and it feels like you’re in a dark hole.”

Now aged 70, Ms Wilson is the president of the ME/CFS/FM Support Association – a Toowoomba-based support group which has been running for the past 32 years.

Ms Clark, 54, is also a committee member for the volunteer-run support group which has since become the state’s peak body organisation.

Theresa Clark is a Toowoomba member of ME/CFS/FM Support Association Queensland. Picture: Kevin Farmer

Designed to raise awareness, advocate for and support others with the conditions, the group also publishes bimonthly journals which are accessible in seven different countries.

Despite struggling with their own health, the two Toowoomba women travel across the state to deliver speeches and offer support to others facing a similar battle.

“Some days are hard especially if we’re not feeling great, but you just remind yourself you’re doing it for all those other people out there who are too sick to do it,” Ms Wilson said.

“If we help just one person, I’ll be happy.”

The condition has impacted both women in several serious ways including a marriage and relationship breakdown and the loss of friendships, socialisation and a sense of independence.

“Even though there are physical symptoms, people can’t see chronic fatigue and pain so it’s hard for them to understand,” Ms Clark said.

“A lot of people are fatigued, but this is more like complete and utter exertion … a task as simple as reading an email or washing the dishes can cause a relapse and you will be bed bound for the rest of the day.

“CFS affects every cell in the body because it’s constantly working overtime to fight an invisible infection.”

Theresa Clark (left) and Lyn Wilson are Toowoomba members of the ME/CFS/FM Support Association Queensland. Picture: Kevin Farmer

While progress has been made since the 90s, Ms Wilson and Ms Clark said there are still issues which need to be addressed with stigmas still present.

They said unlike other chronic conditions, people with ME and CFS were not covered under the National Disability Insurance Scheme (NDIS), unless they also were living with a disability.

The NDIS website states “the NDIS will not provide funding or supports for time-limited (non-ongoing) conditions” or for “chronic health conditions that are not related to a person’s disability”.

It states “it is important to differentiate treatment and care of chronic health conditions and associated comorbidities from disability.”

Results from Chronic Pain Australia’s National Pain Week 2022 survey shows cost was the most significant barrier to access health services for chronic pain sufferers, with nearly 70 per cent of respondents going without food, in order to buy medicine and fund healthcare.

Meanwhile more than half of the people surveyed said they faced stigma from the community and family members, while 45 per cent felt judged by their GP.

A National Disability Insurance Agency’s (NDIA) spokesman said the organisation’s priority was ensuring all eligible Australians living with disabilities had access to the support they required.

“Access to the National Disability Insurance Scheme (NDIS) is based on a person’s functional impairment, not on their condition or diagnosis,” the spokesman said.

“This means no condition is, or will be, automatically excluded from the NDIS.

“It is important to note the NDIS was designed to complement, not replace, other mainstream services such as the health system.”

For more information about the ME/CFS/FM Support Association please phone [phone] or 0498 073 343 or email [e-mail].

If you are struggling please phone Lifeline on 13 11 14.