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A sick joke? Study reveals how ME sufferers excluded from welfare system

Wednesday 12 October 2011

From Malta Today:

 

Woman
ME is still a ‘contested illness’ which is not accepted
as real by all health professionals. The situation is locally
aggravated by the fact that the disease is not recognised
as a disability by the state.

A sick joke? Study reveals how ME sufferers excluded from welfare system

By JAMES DEBONO
SUNDAY, OCTOBER 09, 2011

A study by sociology student Dorothy Cuschieri reveals the frustration felt by ME sufferers who cannot work because of their condition but are not entitled to welfare benefits.

ME sufferers interviewed in a sociology dissertation conducted by Dorothy Cuschieri want the state to recognise their condition as a disability.

Persons affected by ME suffer from profound fatigue and cognitive problems, which do not improve with bed, rest and become worse with physical and mental exertion. There is still no definitive cure for this condition.

The World Health Organisation classifies Myalgic Encephalomyelitis as a physical disease. But this condition is not recognised as a disability in Malta.

Moreover, both locally and internationally, ME is still a ‘contested illness’ which is not accepted as real by all health professionals. The situation is locally aggravated by the fact that the disease is not recognised as a disability by the state.

In fact, many medical professionals are not even aware of the disease.

An ME sufferer interviewed in the study claimed that “many of the medical practitioners seem like they are happy to remain in the dark because its suits them” and that apart from a couple of exceptions “there are no consultants whether at Mater Dei or any other private hospital or clinic who know how to diagnose ME apart from one or two exceptions.”

According to another respondent the fact that ME is not considered as an illness by certain medical professions and by the government, leaves many people dependent on close relatives or their partner.

According to Cuschieri, ME sufferers feel that people in society do not regard their illness as something serious and real. Therefore for them, sometimes it is much easier to just hide their real situation and try to act ‘normally’. They also face judgments and stigma by people in society and by health practitioners.

Most of the persons interviewed were not even able to work. Some even lacked the energy to confront a face-to-face interview for the sake of the study.

One of the ME sufferers interviewed in the study has been unemployed for five years, and this makes her feel excluded because she is not physically able to work or hold a job even for a few hours a week. She also said that this has totally ruined her self-esteem and self-respect.

Some employers do not even understand the condition.

In one case, when issuing the termination form, the management refused to accept sickness as the reason for redundancy and declared that the person had left on his own free will.

“I had to give in, because you cannot force anyone to do what you want.”

The inability to keep a regular job and the absence of State benefits is what makes ME sufferers inevitably dependent on others.

One of the respondents of the questionnaire explained how her expenditure related to ME is considerable. Apart from the vitamins and supplements, she also pays for remedies, massages, private specialist visits and expensive material for curtains to keep the cold and light out.

“I feel excluded because I am not catered for by the welfare system, she says. “If people like me were given disability status we could claim disability benefits… we could also qualify for disability services like Hope Help and Care Service, which would lessen the burden on my family significantly”.

One of the advantages of recognising ME as a disability, is that the State will have to train medical professionals to deal with patients.

ME sufferers presently have to depend either on their parents or on their partner.

“All people with chronic diseases and other forms of disability should be treated equally. There is no need for a specific policy for ME. However, there does need to be a specific policy for training medical practitioners in understanding, diagnosing and treating the illness”.

The government does not cater for the needs of those who have to go abroad for a treatment or for further diagnosis.

A male respondent explained that he used to go for pool therapy at St Luke’s Hospital but his treatment was discontinued as the management decided that patients should only use the pool after an injury or for those who suffer from a disabling condition. In his words, the social policy on ME in Malta is “a sick joke.”

He also put forward what according to him, the government should do.

“ME…should be in the list of disabilities and we should get a disability pension. We should have better benefits like energy subsidies and rebates and not a stupid energy voucher that doesn’t even cover the cost of the meter rents. We should have supplementary benefits and home help for those who live alone”.

Cuschieri contends that the first step to those who suffer from ME for a better life is an inclusive social policy, which helps these people to go through the day with fewer problems to worry about.

“People in society will start understanding them better through the awareness of the illness, employers will comprehend with the sufferers’ situation and they will not have any financial problems giving these people a better sight to future plans for them and their families”.

The study, entitled Life Experiences of persons with ME: A Sociological Investigation, was presented to the Faculty of Arts in part fulfillment of the requirements of the Degree of Bachelor of Arts (Honours) in Sociology.

 

The above originally appeared here.

 


 

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