Thank you to everyone who has messaged or emailed me over the last 24 hours following my vlog. I must admit to having been overwhelmed by your responses. I am touched and saddened by so many of the stories you have shared. Thank you for trusting me with your stories and I hope that in sharing them it can help a little. I may not be able to respond to them all but I am reading every single one. I wish I could send out a collective hug to each and every one of you. So many have suffered thanks to the "it's all in your head" attitude.
Whilst programs such as Beyond Blue and R U OK Day, here in Australia, have made inroads into removing stigma and increasing education of mental health, the stories that have been shared, show just how far we have to go. And that it is a global issue.
Lack of understanding, inappropriate diagnosis, stigma, the continuing effect of the old "hysterical woman" idea, laziness and arrogance, are continuing to put patient lives at risk. Whilst "it's all in your head" remains the easy response to a complex patient and all that follows from that diagnosis, we will continue to suffer.
My heart breaks for those who have the added burden of living with a mental health disorder and face such ignorance. Why would you ever seek the help you require for what is a very real illness when that is the type of attitude you encounter. No wonder people hide aspects of their medical history or don't share their symptoms. A decision that in the long run will impact on their overall health care.
Trust and confidence is being lost and patients are suffering. Mental health, whether the stress of living with chronic illness or a diagnosed mental health issue, needs to be addressed as part of the whole patient. At present a culture has been created where patients fear to discuss any mental health symptoms for fear of being dismissed.
I am amazed at the strength and courage of those who have persisted, sometimes for decades, to finally receive a diagnosis and the treatment they require. Who continue on in the face of dismissal and derision. Parents who fight for their children and husbands who fight for wives. Those who continue on alone when even their family starts to believe that their loved one has a mental health disorder. Cancer, heart failure, multiple neurological conditions, it is across the whole disease spectrum.
In the end it is the most vulnerable patients, who are unable to advocate for themselves, and who have limited healthcare choices, who will pay the highest price for this culture.
Thank you also to those medical professionals who have watched and shared my vlog. It is heartening to know that there are those within the medical community who also see this as an important issue. An issue is desperate need of change.
Please continue to share and comment. It is so easy for these concerns to be dismissed, or such encounters to be seen as outliers, when we remain silent.
This is not just a Dysautonomia issue, it is a patient issue. And it crosses all patient groups. It is also an issue for the medical community. Only together can there be real change.
And this needs to change.
Here's the vlog again for those who missed it.
Here's the piece I wrote for Dysautonomia SOS reviewing the complex relationship between psychology and Dysautonomia.
Psychology and Dysautonomia
Thank you again to all those who have shared their stories. And strength to those who are not ready to share yet. Please know you are not alone.