Since I developed Dystonia in 2012 my past has been dragged up by varying Drs, repeatedly. I was physically and emotionally abused as a young teen for a period of a time, with the support and help of my loving mother and friends I managed to come out of this dark time as a positive, strong person. I had many years of counselling to help me put me put to bed that year of my life.
Unfortunately my GP loves to relive the past and enjoys rehashing old news. He has currently managed to convince himself that my ‘tragic past’ is the cause of my medical conditions, and that they are psychosomatic symptoms. In any other circumstance I would be upset at his words. However I have a lovely letter from my neurologist stating that my history of abuse has nothing to with my current organic symptoms!
I’m not sure why my GP has decided to ignore this letter, perhaps it is just because it makes life easier for him, after all I am a complicated mix of medical conditions but that’s no excuse for his current degrading tone and behavior. I can’t help but be concerned and wonder how many other Dystonia suffers are subjected to this behavior?!
I can only hope that as awareness for the condition spreads the attitude around it changes too.
Please check out today’s VLOG which is on the same subject https://www.youtube.com/watch?v=CJZz7_EMUtE
It’s Dystonia Awareness Week 2015! In a similar way to last year I plan to do a series of blogs explaining the different aspects of Dystonia. Normally my family and I hold a bakesale to help raise funds for The Dystonia Society during the awareness week. However due to the majority of my family having exams this month we have decided to delay this until June. I’ll be posting the date for this soon.
I want to focus today on the road to diagnosis and treatment. This is such a scrambled and boggy area to tread. Many people with Dystonia suffer with the condition for years before getting diagnosed. Often we are made to feel as if it is all in our heads, and end up with referrals for counselling. Trying to get medical professionals to listen and take us seriously can be extremely hard, especially if they have not had any experience with the condition before. I don’t believe they intend to make us doubt our own sanity but it happens.
In 2012, for example, I spent just over a week in a local hospital after the muscles behind my eyes spasmed, forcing my eyes to roll back in the socket and stay there, leaving me functionally blind for 15 hours. Those 15 hours were hideous, I was terrified and in a fair amount of pain. When you looked at me only the whites of my eyes could be seen. I was repeatedly told by doctors during this time to “just roll your eyes down”. Needless to say it became hard not to snap and inform them that if I could do that, I would have done so already. I felt as if no doctor believed me. I was forced to talk to a psychiatrist during my stay.
A couple of months after this I met my wonderful neurologist, who took the time to really listen and examine my symptoms. I was fortunate to get diagnosed in a matter of months. Many others with the condition are misdiagnosed for years, decades in some cases! This is one of the many reasons awareness of this debilitating and life changing condition is necessary. A correct diagnosis leads to treatment that can help improve quality of life. The more awareness that there is the better chance of sufferers being diagnosed in a far more timely manner.
On Wednesday 6th May a Dystonia Awareness message will be sent out Via Thunderclap. The more people that sign up for this the further the reach of the message. So please sign up at the following link https://www.thunderclap.it/projects/24206-dystonia-awareness-week-2015 .