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Amelia’s Story

December 10, 2013 at 10:13

"I am not your typical young adult with typical/average healthcare visits. I was born with Cystic Fibrosis. In short, it’s an inherited genetic illness that affects most of my organs. Faulty genes cause my organs to not function properly. CF in Ireland and the healthcare system goes beyond my personal story and is another issue in itself. So I will concentrate on my personal reflection on dealings with the healthcare system below.

Here is a link to CysticFibrosisIreland's page explaining in brief CF(cystic fibrosis) and CF in an Irish context.
 

So CF being what it is, I have always had to have constant contact with a variety of healthcare professionals throughout my life, even in those very rare breaks where I am well. Transitioning from children's hospitals and specialists to the very different area of adult healthcare at the age of 16. From attending CF specialized doctors and nurses, specialists from other realms of the medicine world i.e. E.N.T and Rheumatology doctors (CF related issues range across the board) to all the other ‘little people’ that are hidden away in the depths of the health-care world.

Basically there are not many types of healthcare workers that I can think of that I have not met in my life. My experience, albeit unique, has been good and bad. In comparison to other stories, I’d automatically say I’ve done okay; I have not had any major incidences where I felt insulted or made feel ashamed or mistreated. However I have a theory that has to do with my specific health background. Every doctor that is not my doctor, fears me the minute I mention my history and cannot help me until communication from my specialist has been reached. For example; GP doctors and College Health Centre professionals. But that is not a lack in their ability of their profession but a round-a-bout way of admitting that perhaps my doctor does indeed know best.

In the past I have gotten doctors and/or healthcare professionals in different fields and health care role’s who don’t ‘play nice’ i.e. act kind, they have had attitudes that could make even the happiest person contemplate breaking down and crying from sheer unpleasantness. I have my CF to thank for the knowledge and ‘know how’ to approach and deal with these situations. When you know a little bit about medical practice and some knowledge the game sort of changes in your favor. Not to say health is in any way a game, more so the atmosphere changes, they know they are almost on a level playing field, forgive the game metaphor again. Knowledge in this case is indeed power. Knowing what you need/want from them and accepting nothing less than a job delivered to the best of their abilities without the absence of politeness of course.

To sum up my ramblings: I have had good and bad experiences as a young adult stuck in a world of healthcare providers and medicine by no choice of my own, No matter what degree of medicine you encounter I think a positive approach is definitely needed, from both sides. My advice; ask, ask and ask again. If you don’t understand keep doing just that until you do. It is your health, your body, and your life. They are there to provide a service to you, use it and never feel uneducated; otherwise we would all be our own doctors." - Amelia. 
 



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