Tuesday, 18 February 2014

The Long Term consequences of "It's All in Your Head": Thank You.

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.

Michelle

6 comments:

  1. Thank you Michelle. Your words have so much truth. It's unfortunate how universal it is for dysautonomia patients to experience invalidation from medical professionals, especially as we are desperately just trying to get some semblance of a life back. The primary doctor I saw when mine started also said similar things to me: "it's just stress" or "you didn't have a heart attack, why did you leave your PhD program?" He even gave me medication that was obviously making me worse, so much that my resting pulse was 135. Even to this day, even after all the confirmation and treatment I now have for POTS/dysautonomia, I still question whether everything is really "all in my head." I am particularly interested in the undercurrent of sexism female dysautonomia patients experience. I think we are all living some warped, modern version of Charlotte Perkins Gilman's "The Yellow Wallpaper". I really appreciate your comments about invalidation.

    I'm so sorry you had to experience that frustration at the ER. It's terrible to know how far you've come and the confirmation you have fought for and one doctor will try to dismiss it all. That's partly why I didn't go to the ER a few weeks ago when I desperately needed to. Hang in there Michelle and thank you as always for your words.

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  2. I was just a young girl when I first heard "it's all in your head" from a doctor. For that reason I didn't do anything about my symptoms for years... they progressed as I got older. I continued to ignore them for 5 years because I just didn't know if they were "real" or not. By the time I went to the doctor I was in really bad shape... I was diagnosed with all sorts of issues as well as Dysautonomia... at this point I'm doing well. Except for when I have to deal with the aftereffects of a seizure (very stroke like), but even then, when I can't walk on my own, when my face is drooping and I can't hold my eye open, when I can't function properly... I still wonder if it's just all in my head.

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  3. Dear Michelle,

    You can't eat the cake and keep it whole. You can't say how dissmayed you are when a certain disease you are familiar with is mistaken for a psychiatric disorder, because of unusual symptoms that overlap with those of psychiatric disorders and at the same time talk about the high prevalence of "true" psychiatric disorders.
    I totally agree with you regarding the enormous damage (which can at times be fatal) caused by attributing a physical illness to emotional problems. I disagree with you that psychiatrists have tools to know.
    If you look at the DSM-5 you will see the diagnosis of functional neurological disorder, which is based merely on the lack of a known neurological disorder/normal test results; the controversy regarding the dividing line between reactive and true depressive disorder is still ongoing. The cause of Peptic ulcer was an emotional problem and personality disorder until the discovery of H. Pylori.


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    1. Dr H, you obviously missed the point of Michelle's vlog. As if it was necessary to point out; Michelle comes from an additional stand point of being a trained Neuropsychologist as well as a patient. If you were in her, and 'the rest of us' Dysautonomia patients position, you would understand how we all become 'depressed' at various points, due, in a large way, to the frequent encounters with medical people who find it easier to label us with 'hysterical, hormonal woman' than to try and see the whole picture (I wonder what the picture is if you are a man suffering with Dysautonomia, how are They labelled?) How would You deal with a debilitating, chronic condition like Dysautonomia? I'm sure you think you could handle it better, organise your life so you don't get so many 'flare ups' etc! Let me tell you that if a 'ballsy' knowledgeable lady like Michelle struggles to 'make herself heard' what chance do we with no medical qualifications and less 'inner strength' have? 'We' have all sat/laid in front of Many Medics with our symptoms, and so have a wealth of experience and proof in how patients are dealt with. It took me 7 years of 'fighting' to get a diagnosis, and that was only possible after paying for a lot of expensive tests, including the crucial Tilt Table Test, that should have been free on the NHS but would not be sanctioned, and Still I feel that I'm not taken seriously, even though I have the proof that it's not 'All In My Head'. It's a shame that you, as a medical professional, could not look at what Michelle and her contributors are saying and think " something is obviously wrong with the way people with chronic, complex conditions are treated; that they are often 'more knowledgeable' than most 'non-neurological' medics on Dysautonomia symptoms, because they have learnt so much over time dealing with it. So many of you seem to be affronted if a lowly patient tries to tell you what is wrong with them, knowing more than you do. No medical person can know Everything about Everything, and every Dysautonomia patient worth their salt , (and we all love our salt!) has a lot of information on how to deal with the symptoms, as sometimes 'self-help' seems the better option than going to A&E and 'fighting' to get some help. May I recommend a book by Dr Blair Grubb if you want to read up on this condition, he is a world leader in the condition, and sees his patients and other suffers as people, not hysterical women.

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  4. Your vlog touched me so deeply. I had exactly the same experience with a gp, who I went to for help with some crazy symptoms. He blamed it on stress and dismissed me out of hand. Only the fact that my older sister had a brain tumor made him pause and order a CT scan. 2 years on, I am finally seeing a neurologist after tests, pills, and more tests. Confident that the diagnosis is Fibromyalgia, but just have to find a Dr that doesn't have horses on his mind. I had a great GP but she just left to have a baby and I have to bring the new one completely up to speed. Sigh. Dr's. To make matters worse, I do have depression brought on by the chronic migraines. And I did get a specialist who asked me what I do all day if I don't (can't!) work. I told him I knitted. That shut him up lol....

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  5. I developed illness as a teenager. Mum and I did many rounds of medical tests, all 'normal" until the GP said it was all psychological, wrote a script for a tranquiliser that mum refused to fill and that was that. I was left on my own till I was old enough to do my own research. 30 years later I'm having a go at it again, but only because I'm bloody stubborn. The doctor that diagnosed me with Chronic Fatigue Syndrome neglected to tell me for some time.
    Thank you for exposing the very real problem of doctors that say 'it's all in your mind". I encountered one only two months ago, so it's not at all an historical problem. I have co-morbid clinical depression and my psychiatrist is my biggest support. He is sure that I have a physiological illness and helps me deal with all the twits in the system. He also bulk bills. Thanks for speaking for all of us, jen

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx