Adolescent perspectives on CFS

International Meeting on Chronic Fatigue Syndrome

18-20 May 1994 Dublin Ireland

I'm Alison Hunter and I'm 17. I have had ME/CFS for over seven years following an encephalitic virus aged nine.

My main symptom has been an intractable headache; also muscle and joint pain, cognitive problems, nausea and severe weight loss three years into the illness. But aside from battling the physical effects of the illness, I have had to battle with ignorance, scepticism and what some would regard as medical abuse.

I have also found the isolation that is associated with months and even years being housebound, unable to enjoy social contact with other teenagers, particularly trying.

However, over the past few years I have spoken with dozens of adolescents and through talking to them, combined with my own experiences, have come to learn a lot about the issues for adolescents with M.E. While they vary from case to case, two experiences have been almost universal.

One is the struggle to maintain a formal education i.e. regular school attendance which becomes difficult for a number of reasons. Many of these difficulties are practical - for example carrying heavy school books, navigating stairs, stuffy classrooms, having to sit upright for extended periods, and the problems associated with sequential learning and "catch up". Also, many adolescents find mental effort and concentration to be every bit as detrimental to their health as physical exertion.

There are options such as home tutoring and distance education - these reduce problems of mobility, whilst aggravating isolation as the student completes work at home, missing vital peer contact.

Of great reassurance to me when unable to do schoolwork was the wise advice of my school headmistress who said, "Education does not only occur from nine 'til three between the walls of a classroom." One boy, Ben, spoke for all children when he said, "I want to go to school Mum so I can hate it like everybody else."

Every parent heaves a sigh of relief when their child reaches the age of fourteen and nine months - and prolonged absence from school no longer excites official concern.

I believe it is imperative that children and adolescents with M.E. be trusted and empowered with decisions regarding their own health and capabilities. It is a rare child whose initial diagnosis wasn't either hypochondria or school phobia - yet these same children do not make remarkable recoveries on the weekends.

I have not encountered one adolescent who was not highly motivated and mourning the loss of the 'best years of their life'. Surely, any psychological problems are an understandable consequence of one's predicament and, often damaging, experiences.

I challenge anyone to experience a severe chronic illness like M.E. at any age, given the lifestyle restrictions, pain level..., and not to experience some degree of anger, frustration and depression.

Dealing with health professionals can present further problems. At best, doctors can support the diagnosis but offer little in the way of relief. At worst, they display attitudes far from easing the suffering of the patients and are extremely harmful. This can be witnessed in the case of Sarah, very ill in hospital, and complaining of shortness of breath, who was forced to prove it by running up several flights of stairs to the point of collapse. Respiratory function tests later showed clear abnormalities.

Paradoxically, often the sicker one gets the worse this dilemma becomes. When confronted with extremely thin patients unable to walk, talk, or eat, doctors have panicked and said "it can't be M.E. after all."

Perhaps only when these severe cases are documented in the medical literature will the chances of alternative diagnosis be minimised.

Adolescents, particularly girls, are often accused of dieting/Anorexia Nervosa when they are too nauseated to eat, Pervasive Refusal Syndrome, or Munchausen's Syndrome by Proxy. Parents are told they are simply too involved with their child; mothers who work are neglectful, whilst those who don't are regarded as 'nurturing the illness'.

At the extreme end of the spectrum, adolescents have been admitted to psychiatric institutions, and even taken into State care.

I have been involved with M.E.Y.A. since its birth two years ago. From a founding party of eleven, its membership has grown to over 250 teenagers in NSW alone. There is a common misconception that support groups are merely 'pity parties' and promote an unhealthy dwelling on one's disease. This is definitely not borne out in our experience with M.E.Y.A. One of M.E.Y.A.'s most important functions is to provide social interaction with other teenagers in a non-threatening environment. This is achieved by holding regular low-energy Lounge Lizard weekends, has been very positive, and we have received countless letters of encouragement, often displaying the participants' healthy senses of humour that have remained very much intact.

Claire wrote, 'As an almost-over-it, just-don't-let-me-get-the-flu ME sufferer, I thought it was time to support the people who have supported me and to let people know that you can get through it; vertical life dose exist!'

We now receive regular referrals from medical professionals. In a perfect world, there would be no need for a group such as M.E.Y.A., but in the interim I would like to see branches established worldwide to support, encourage and, above all, empower adolescents, until the day arrives when we can take a pill and be rid of this devastating disease forever.

Alison Hunter, September 1994

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Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

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