Recently I attended a medical conference in France, where I took part in a presentation (by my GP) in regards to my 'journey'. The focus of the presentation was to encourage patient participation with their diagnosis and treatment.
The whole experience was.. new! I made it through a plane journey (yeeey) and didn't feel like I was going to pop on the plane like an overcooked hot dog. Made it there and back again, with a few bumps along the way, but what matters is that I did it! Big steps.
Anyways, I'll do a proper write up later but this is the little speech that I did as part of the presentation:
"The truth is that whether its the right thing to do or not, more and
more patients are using the internet to research symptoms. Sadly it
appears that a vast amount of confidence and trust is missing between Dr
and patient - most probably due to the outcome of a consultation,
innacurate medical letters or the manner in which the patient has been
treated. Patients in this situation seeking answers or information will
inevitably use the internet, and with this reality in mind, I believe
it’s crutial to encourage the best use of his tool possible, with the
GP’s support. However, I feel its more important to have a good
relationship with your doctor that allows discussion, without the risk
of being seen as a self diagnosing, anxious, hyperchondriac and allowing
the patient some credibility in their research. One doctor can not know
every detail about every illness, and the unwillingness of some medical
professionals to accept this has cost me over 5 years of my adult life.
Most people i know feel that they can't even talk to their doctor,
they are simply not interested or don’t have the time. I believe that
working with your doctor can minimize the risk of finding ‘worst case
scenario’ situations online which could give the patient some peace of
mind. This alone could save precious time, which may have lead to a
spiderweb of unnecessary appointments and tests in an already heavily
strained medical system.
I know for certain that without the trust of my
gp, the advice from members on healthunlocked and my own perseverance
and research, I would not be healthy enough to come here today or have
access to the medication that's given me back some of my life, with all
the above going against what I'd been told to do by various consultants.
For me, the Internet has played a crucial part in my diagnosis and treatment, for which I am unbelievably grateful. "
More soon!
Welcome to my health blog. I am a 29 year old living with a range of strange and confusing medical symptoms and conditions including various functional/neurological disorders, Endometriosis, PCOS, Raynaud's Disease and seronegative Hughes Syndrome. This blog is to document my struggle with doctors and the impact these illnesses have on my life. I hope that in some small way, my experiences will give others who are in similar situations some sort of strength or some form of comfort. Thanks for visiting!
Some may question my choice of title but if you are ill constantly and seem to always have your brain on pain and discomfort that's making your life very difficult, you begin to feel that perhaps you are a hypochondriac or what's worse, that other people see you as one. Whether you are or not, you still feel pain, sadness, and dispair which brings me to this quote from Harry Potter and the Deathly Hallows by J.K. Rowling:
"Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?" - Albus Dumbledore
Tuesday, 15 October 2013
Conference Speech
Labels:
APS,
Conference,
health,
Hughes Syndrome,
Lupus,
Patients,
raynauds,
seronegative APS,
SLE
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