parentingcfs

Navigating adolescent CFS

Courage November 12, 2012

Filed under: CFS Treatments — parentingcfs @ 9:57 am
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Being a teenager sick with something that no one really understands requires such strength to deal with the never ending questions of your own parents, let alone health professionals. “How do you feel today? ” “Is your brain fog a little better?” ” What number would you give your nausea levels today?” “Are you hungry/thirsty?” “Are your legs throbbing or aching?” Then there’s the courage required to battle through the symptoms you are dealing with to have as ‘normal’ a life as possible. For some that may mean being able to get out of bed for an hour, for others getting to school despite feeling weak, sick and confused. I am so often moved to tears by the tenacity of the children I know who are struggling with health issues.

There is also a certain amount of courage that one has to find as a parent. I know there are parents who have had to find a lot more courage than I. However the courage I want to write about today takes the form of fronting up to the established medical system and daring to question established ways of doing..because they simply aren’t working for our children. It has taken a great deal of courage for many of us to question our trust in doctors and hospitals and to go ‘outside the system’ and past the double blind studies!

One of my friends recently pointed out how visiting good alternative practitioners with her child leaves her feeling hopeful and supported whilst leaving a specialist’s appointment most often finds her despondent and desperate. I have been hearing a little here and a little there and am hopeful that western medicine is starting to realise that there is much to be learnt from ‘eastern’ medicine and embracing a more holistic approach.  We are fortunate to see several doctors who completely understand why we seek answers ‘outside the system’ and yet there have been many times over the past two years where I have had to brace myself for the questioning looks and polite dismissal of any ideas not in that particular doctor’s immediate area.

I am not explaining myself very well. It is getting late and I am tired after a rather intense day at work. However I wanted to share with you an interview with child and adolescent psychiatrist Professor Graham Martin,an international leader in suicide prevention, educator, researcher, a sometime thespian, poet, mediator and black belt in Karate. In 2009, his life took a radical turn when he was suddenly paralysed, and the tables were turned – doctor became patient. He eloquently describes the limitations of our current medical system and what can be gained by embracing other options.

For all those parents and carers who have felt let down by the medical system and had to grit their teeth and accept that double-blind studies are not the only answer, this interview is for you. Enjoy it here !

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8 Responses to “Courage”

  1. Thanks for sharing! Oh my the walls we have faced when dealing with western medicine. The idea that there are things yet to be discovered is rather foreign to some arrogant doctors. If they don’t have the answers then it must be all in your head. We were “fired” from a practice because we sought the advice of a neurologist knowledgeable in CFS/ME without his knowledge and approval. He had previously told us he had no time to research this illness so I thought he would have been appreciative of any information that could come his way to help not just our daughter but those patients he would be meeting throughout his career. I do believe the Hippocratic Oath to do no harm is often broken by these doctors!

    • parentingcfs Says:

      Yes I think about that ‘do no harm’ oath too sometimes. We don’t want to throw the baby out with the bath water so to speak so we shouldn’t be made to choose between practitioners as you were. That’s a terrible story about being ‘fired’. And what a narrow minded doctor…. Such a shame. Thankfully there are many wonderful doctors out there too. Thanks for sharing your story. I hope you have better support now.

  2. Linda H Says:

    So very true and you expressed it all so well.

  3. Sue Jackson Says:

    No, you explained it quite well. It does take a lot of courage – for both the kids and the parents. With both medical issues and school issues, my husband and I have been through numerous battles. We always say to each other, “What happens to kids whose parents aren’t well-educated enough to do all the research themselves?” Or parents who don’t have the financial resources to keep trying one doctor after another to find one who will at least understand CFS, let alone know how to treat it. We have to constantly act as advocates for our kids…and it is especially difficult when we are sick ourselves. Excellent post – I will go check out your link –

    Sue

    • parentingcfs Says:

      Thanks Sue. Yes, it’s so sad to think of those who fall through the cracks and are not even believed by the people around them. And as you say, an extra battle for those who don’t need anymore to deal with when they are sick themselves. Hope you enjoyed the link. : )

  4. Marita Says:

    Thank you for the link, it does indeed to a great deal of courage to question the experts … in our case it is more often the girls teachers I’m questioning. Looking for answers outside the box is not often encouraged.

    • parentingcfs Says:

      Oh yes Marita, questioning/persuading teachers is just as hard. I am lucky to have been a secondary teacher so makes it much easier for me to negotiate potential pitfalls and I am very grateful. I hope you come across the fabulous ones out there more than you do the less open ones. x


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