Betrayal of the Severely Ill?
Appendix 11: Personal Experience with ME
by Michael Lyons
Seven years is a long time to deal with any chronic illness, but dealing with a disease that is widely misunderstood by the medical fraternity and the general public, one which has no origin, no diagnostic test and no cure, well, the odds are stacked against you right from the start. I can tell you, it is a very lonely trail of confusion and frustration stacked on a mountain of symptoms and intense pain.
After a diagnosis of glandular fever I boarded a plane with my mates to play rugby for Central Queensland. After my return to Australia and settling back into work on the family property, where we grow beef and cereal crops, the days seemed to become longer and harder to push through. So, I considered myself unfit. I ran 10 km three times a week, built myself a home gym, worked a full 8 days a week and had a very busy social life to boot. Life was a real buzz, but my body couldn't keep up. The more taxing it became the harder I pushed. Every day life consisted of spraying crops, dipping sheep and cattle, riding and stock work and coping with allergies, which I'd grown up with. I survived on what I call the 'she'll be right' syndrome. I decided that nothing was too difficult to deal with until a bout of Ross River Fever (an Arbo Virus caused by a mosquito bite) knocked me off my feet. Nothing could have prepared me for the following weeks, months, or as it turned out, the following years.
I was unable to work, so moved down to Sydney for what I thought would be just a couple of weeks for tests and maybe treatment. Ross River virus was an acceptable diagnosis to have for a few months, however, my health deteriorated to disabling fatigue, post exercise malaise, musculoskeletal soreness, intractable headaches, neurological difficulties, memory impairment, severe insomnia, photophobia, gastro-intestinal complications, chest pain and exhaustion. The doctors and specialists were fully convinced there was nothing wrong. All tests were negative.
After 6 months of the resident Sydney experts discussing my relationship with my family, how I felt about myself and 4 different types of anti-depressants, which didn't work, (according to the doctor), I woke up to what their treatment was all about - DEPRESSION, which I had described as FRUSTRATION and CONFUSION. I remember telling the doctor, on my last consultation, that if he had concentrated on my symptoms in order of severity from 1-15, then No.15 (being FRUSTRATION and CONFUSION) would have taken care of itself.
Usually by the time I arrived for a consultation, after some hours travelling, I had done enough damage to land me in bed or housebound for weeks at a time and by the end of a consultation, when I was so often told to "Snap out of it" and everything would be O.K., I felt brainwashed and sometimes thought maybe they are right.
I stopped going to the doctor. It's incredible to me now, how much trust I placed in the medical fraternity and I look back now on these experiences and find it humiliating and degrading to have been treated so carelessly.
I was a danger to myself and others on the road when returning home after these visits, due to the disabling fatigue and exhaustion and the neurological difficulties which rendered me as useless as a drunk driver when it came to judgment and response. I wonder if there would have been any accountability on the doctor's part if I had caused a fatal accident- I think not!!! Actually, they would never have known and I would have been added to their statistics as another patient who didn't return for treatment, and so assumed, completely recovered.
After these experiences, and unfortunately most CFS people seem to go through them, in desperation, I embarked on a self-help form of treatment to try to regain some sort of quality of life. I had the amalgam fillings removed from my teeth, my wisdom teeth removed, hair follicle tests sent overseas, I started taking Chinese herbs, had allergy tests, countless blood tests, a series of incredible diets, celation therapy, meditation, I went to osteopaths, naturopaths, I had reflexology, iridology and I talked to anyone who would listen.
One of the greatest self-help treatments was going to a support group for young adults and realising I wasn't alone. Our experiences were the same, our symptoms very similar and when they talked, they explained my condition better than I could express it. I learnt a great deal about myself in regard to M.E and I also become very aware of how devastating this disease could be. I was fortunate in that I had only tried 1/8 of the treatments available on the open market and so I had an immediate data base provided by all these people on how to deal with each situation.
When I first joined the group, I was the eldest member at 25 and I considered myself the most fortunate. The average age was 16, mostly at school, the duration of the illness ranged from 2 years through to 10. Within 2 years we had a membership of 300 which only scratched the surface. There were so many we didn't reach. Up until the age of 22 I had lived a pretty full life with boarding school, college friendships, relationships. I had worked all over Eastern Australia. I had a tremendous family life and if I had my chance again I wouldn't change a thing.
From the first day at the support group I realised how much of life I had taken for granted. Most of the young people who related their stories hadn't even had a chance to grow into a personality before this disease took their futures away. Here was a group of people whose quality of life was shocking/unbelievable, but because they had been sick from such a young age, they had learned to cope from day to day. The fact they were still alive after everything they had been through was testimony to how incredibly strong willed they were. I was humbled by their experiences and it gave me the courage to fight for what I believed in, which was myself, and the young people of the disease.
CFS presents special difficulties in young people compared to adults. The early symptoms often lead to an incorrect diagnosis of emotional or adjustment problems. A slow onset at a young age and a variation in symptoms and their intensity combined with the relapsing/remitting curse of the disease present special challenges, but this should not be an excuse for doctors to pass the buck. On the other hand, young people become used to feeling the way they do and consider their symptoms to be too normal to mention, or so strange they shouldn't be mentioned. They constantly don't want their friends to think they are different and thus they can slip into a pattern of trying to cope on their own and not consider their problem as serious.
A Chronic Fatigue Syndrome personality can form, meaning their teachers, family, doctors, believe their low functional levels are normal because their "young age" hasn't enabled them to form any other impression. It would be a big ask for a young person to have the self confidence and assertiveness to deal with sceptical professionals also to have the sophisticated social skills necessary to convince friends and family of their plight.
Young people are usually taught to respect adults and in fact believe that what they are told by an adult must be true. If they are told they are not sick, they tend to believe it. This was enforced at a conference in Bristol, where a Paediatrician said, "Doctors who disbelieve in CFS can end up being rejective, or even abusive to parents, and young sufferers can be subject to a form of child abuse by professionals as they are rejected and disbelieved.
Unfortunately, I have witnessed this case scenario on a number of occasions where chronic patients and their parents, who were admitted to hospital through the emergency room and with a diagnosis of CFS, were treated with hostility and contempt. The symptoms of a localised severe infection of the foot, inability to breathe, intractable headaches, severe chest pain, ulcerated throat and more severe symptoms which were not mentioned in the initial assessment by the Doctor. The patient was accused of holding her breath and being an HIV drug user, due to the infection on the foot. The severely ulcerated throat was considered to be self-mutilation caused by a stick. The nursing staff overall treated the entire family so badly they were forced to check out of the hospital, still in a very serious condition, to go home to fend for themselves.
On other occasions, young people who have gone through the hospital system have been given all the tests available, only to be told there was nothing wrong with them. Subsequently, they were given a diagnosis of an eating disorder and transferred to a clinic. The parents followed the doctor's instruction in fear of reprisals and the patient was able to book out a few days later.
These stories are common to the manner in which many young people have been treated within the health care system. There is a very low percentage of doctors who choose to recognise CFS, consequently, there is a high percentage of misdiagnosis.
When your body is screaming out for medical attention and understanding, it is devastating not to be believed, but instead to be branded with such things as depression, school-phobia, malingerer and generally being told you need a good kick in the rear to snap you out of it.
This treatment of the patient and family inevitably leaves the family to fend for themselves and in so many cases, the disease escalates into a more severe form. It is these cases in which a misdiagnosis becomes almost standard practice and places the patient and their family in a very serious predicament.
Dr Mark Lovelay, an Infectious Disease Specialist, who manages an AIDS and CFS clinic at OHSU stated that a CFIDS patient feels everyday significantly the same as an AIDS patient feels two months before death. Regardless of this considered public and professional statement, here in Australia, these same patients are dismissed so often as hypochondriacs and branded with diagnoses as Munchausens Syndrome By Proxy and the Persuasive Refusal Syndrome.
These types of diagnoses leave a patient with two choices: a) either to try surviving day by day under the burden of a very depleted quality of life, or b) to take over life and end the misery. Australia has the highest youth suicide rate in the world, and it's higher in the rural areas. My point is, Doctors and Specialists and other professionals can help stop CFS sufferers becoming a statistic by supporting and protecting them and being sympathetic to their needs.
Professor Malcolm Fisher has stated that there are time lags between occurrence recognition, finding a label, acceptance and scientifically proven treatment. "At times like this, my profession rarely covers itself in glory. There is tragedy associated with the delay between a "NEW" disease arising and professional acceptance, and CFS wears the delay in relative silence." Unfortunately, in Australia, we have witnessed certain professions covering themselves in glory in regards to CFS. Nevertheless, there continues to be an ever increasing escalation and severity in the disease and in the number of sufferers due to a lack of treatment, understanding and correct diagnosis.
I have been asked to speak to you to day to present the severity of CFS as a sufferer, or should I say as a consumer - because it surely has consumed me. It is reassuring to know, having heard the speakers of the last two days, that finally, doctors will be able to recognise and accept this disease for what it really is. Hopefully, the "relative silence" described by Professor Malcolm Fisher, is over and the tragedies associated with it will come to an end.
It has taken me 7 years to get to where I am today and there is a long way to go before I return to full health, before I can play that football game, ride that stock horse, run that property, before I can return to a normal social life.
I have learnt the hardest lesson of all from this disease - There is nothing it can't take away from you...
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