CFS Health Consumer Perspective:
CFS - The Consequences

Submission evidence also illustrated the difficulties of living with the illness.

"As a Psychiatrist I hope you may appreciate the extreme degree of stress, frustration and despair people with CFS experience as this complicated illness completely changes their lives and those of their families. I firmly believe in treating the symptoms of this illness eg. correcting sleep disorders, pain, nutrition, bowel disturbances, eye problems and others."

CFS appears not to respect any person due to their age, gender, socio-economic background, or occupation. The "invisible disabilities" associated with Chronic Fatigue Syndrome soon make their presence felt in a tangible way. Often people with CFS lose employment, suffer financial hardship, endure enforced changes to their previous socio-economic lifestyle, including increased medical expenses (often caused by chasing "the miracle cure"), reduced income, less social contact as friends give up on a relationships that fail to meet their needs as well, misunderstanding of friends and family, work colleagues and the wider community. Media reports often trivialise the illness and associated aspects by focussing on the the latest research "cures," and anecdotal tales of people, often wel known sports people, who have recovered relatively quickly.

"One consequence of being chronically ill for years at a time is the isolation. As much as you try, it is very hard to keep up the old friendships from school, work and Uni. People move on, but I have not been able to go out and socialise like before. And when you do, you have a much different view of society and the world. Your interests change. You learn not to judge people by how they look.. So often I am told that I don’t look sick. Most of the time now I don’t tell people I am sick when I go out."

The wide range and severity of CFS symptoms is a restrictive factor in their own right unlike other chronic illnesses where disability may be more specifically focussed.

Discrimination

Misconceptions about people with CFS are often related to their age. For example, children are often thought to have school phobia; (female) adolescents are believed to be suffering from anorexia nervosa, adults are thought to be suffering from stress, mid-life crisis, relationship problems, career anxiety etc; older people may be thought to have dementia.

"It is my experience that being a male with CFS is far easier than being female with CFS. I am taken more seriously and believed if I complain about a symptom. If I can’t eat due to nausea or gastro-intestinal problems I will be believed. When girls I know say that, they are often presumed to be anorexic or neurotic."

Use of more intensive health care services can result in frustration and misunderstanding by both workers and PwCFS. CFS-specific models of treatment for CFS are still underdeveloped in hospital settings. PwCFS are managed according to other, often irrelevant, established illness/disease models.

"I have seen people in severe pain with CFS discharge themselves from hospital because they were not receiving proper pain management or care. Those staff who did not understand CFS were cruel and unsympathetic. They would wake the person up early to have breakfast (ignoring the fact that they had trouble eating and only got to sleep at 5.30am because of the severe pain they were in); they would open the blinds and let in strong sunlight (ignoring the fact that the person had light sensitive headaches for the past 3 months)."

The subject of inadequately managed pain and onset of poverty was often linked in submissions to the subject of suicide or with extreme difficulty in coping with life from day to day.

"The issue of pain management just wasn’t to be discussed, while the tone of the nursing staff was that the patient should "try harder". This just ignores totally why the person was put into hospital in the first place. The time spent there has often seen people sicker when they left than when they went into hospital."

Discrimination is also reported in the process of claiming Worker's Compensation, Life/Income Insurance total and permanent disability payments, and Social Security Pensions and Benefits.

"PwCFS seeking financial support from superannuation funds, including State and Federal, often report drawn out applications, ill informed and hostile review panels, further medical tests, lack of consultation with the treating doctor and as a last resort, legal action in an effort to obtain some financial support. This put the PwCFS under significant stress and may impede recovery."