The mind/body link

[Sylvie33]

https://thedysautonomiaproject.org/pots-depression-an-invisible-illness-affects-the-body-and-the-mind/

This is an excellent, clear article delineating the results of two Vanderbilt-sponsored studies investigating the links between dysautonomia/POTS and ADHD, anxiety, and depression.  I feel it is timely, for there are threads here now noting the frustration of posters who report their family and others perceive dysautonomic symptoms as "psychosomatic,"  or basically not real and/or in ones' head -- and therefore, in ones' control.  It states that basically, in all addressed disorders, the divide between what is "physiological" and what is "mental" is an artificial one, they are all in essence, real, neurological in origin and expression, and may be interlinked.  None of these disorders is simply "in our heads!" 

Of course, there is a much greater stigma associated with depression, anxiety (and, to a lesser extent, ADHD) than with dysautonomia -- which is often upheld even among sufferers, who feel additional guilt and stress for being unable to simply will these sometimes more disturbing symptoms away. Please note how the authors emphasize that, although no one really knows how, the very same neurotransmitters are involved in depression, anxiety disorders, and dysautonomic disease.

Hopefully, this article will help to us to better understand these issues.  I also hope it sparks some discussion ...for I know it is difficult for many of us to acknowledge and discuss the anxiety and depression that often accompany dysautonomia.

[statesof]

That was an interesting read, thank you for sharing!

[Sylvie33]

You're welcome Statesof!   It's hard to find good, accessible information on this topic.  I'm glad I discovered it -- it looks like an interesting site to follow,

[yogini]

I'm not sure it's helpful for POTS patients to call our disorder a mind-body disorder.  To a layperson, it makes it sound like something we can control.  It isn't. 

[Sylvie33]

Hi Yogini,

Yes, it is a dilemma, given the misconceptions about dysautonomia and the tendency of not only lay people, but physicians, to label POTS symptoms as psychosomatic (or, as seen below, as a psychiatric disorder).  However, as noted, mood disorders are common in our community, so how can this be addressed in a way that does not further stigmatize us?

Apparently the Dysautonomia Project, where I found this article, is set up to educate physicians.  They emphasize the disorder is not even taught in medical school.  I found this on their site:

"Huffington Post blogger, Deborah Cornwall, reported on a survey of more than 400 Dysautonomia patients released in July of 2014 by Dysautonomia International that: 

• The average time to diagnosis is 6 years.
• 83% of patients are initially misdiagnosed with psychiatric disorders
• Only 12% are diagnosed by their primary care physician or pediatrician
• 35% of patients see between 10 and 20 physicians before diagnosis"

So yes, it then becomes very hard to acknowledge and discuss true psychiatric ailments that often accompany POTS.  I think it's difficult even for people within our own community.  I also read the situation is more pressing in the MCADS community, where 70% of people with this disorder also report depression.  The theory is that inflammation causes both -- through the release of histamines and cytokines.  I just wish there was better understanding and treatment all around.

 

 

 

 

 

[yogini]

Hi Sylvie,

It's pretty common for people with ANY chronic/serious illness to have anxiety, depression or other mood disorders.  Think about it - it is very emotionally difficult to think about mortality, to lose your mobility and not be able to live like a "normal" person.  If you once were "normal" it a great loss.   In our case many of us experience this at an unduly young age, where none of our friends can understand it - many of our families also can't understand.  We miss school and work and can't take care of our families. We also struggle to find treatment as you point out.  But a patient with cancer might face many of these same issues, or a person with Lou Gherig's disease.  POTS is no different.

I agree there are some chemical and physiological factors in POTS which can contribute to mood disorders.   

There is unfortunately a stigma to having a mood disorder - but again that is not unique to POTS patients.  I hope we can help one another to acknowledge and seek treatment for  for our emotional issues without calling our condition a mind body disorder.  I hope doctors don't start referring to it that way.  It just makes it sound like it's in our heads and  can be controlled.

 

[Sylvie33]

Hi Yogini,

Yes, perhaps calling out POTS as a "mind-body" disorder is bit too strong at this point, when we don't have recognition as a body disorder!

I understand and agree with you about the effects of any chronic disease on mood, we are all grieving significant losses.  In addition, we suffer the problem of dismissals and misdiagnosis in the medical community....it's very real, sad, and frustrating.  

However, people with chronic neurological diseases (like MS and Parkinsons...and dysautonomia) have a higher incidence of mood disorders than, say, people with cancer.  

So the "Dysautonomic Project" (DP) was created to specifically educate the medical community about POTS ....and its association with mood disorders.

Your emphasizing the effects of POTS on youth speaks directly to its mission.  They exist in response the death of Christina Tournant: a brilliant, young MIT student with POTS, whose parents and doctors had no idea she was depressed until she took her life.

You can find medical research articles  about this issue, and other good information, on their website.  They've also put out a book (rave reviews).

 I think  DP was set up to confront stigmatization, and I think it's really smart they've first targeted  the medical community.  I'm glad you responded so eloquently to this post....I think it's an important issue in our own community.

[yogini]

Interesting.  I wonder if MS or Parkinsons would be classified as a mind-body disorder?   I think people generally get that they are physical conditions, not controllable.

[Sylvie33]

The key notion, in the way the authors use "mind-body," is that the "mind"is not causal ...ie:  making things up, or "somatizing" symptoms, but that physiological processes in the brain  have psychological, as well as physical, effects....especially in neurological disorders.  

I think the best way to think about this is to raise our consciousness to know our mind is part of our body...that mood/"mental" disorders all are, in essence, physiological/neurological In origin.

These physiological processes are varied.  In our case, the same chemical/neuronal imbalances associated with POTS may also cause depression, anxiety, etc.

This is why education is so important.

There's lots of literature/research on depression in MS and Parkinsons.  I have a great doc who specializes in this. He's a psychiatrist/neurologist who works in an MS clinic. We talk about this issue all the time.

With that said, "mind-body" makes sense.  Yet we live in a culture that generally doesn't "get" this....including doctors!  Thus the mission of the Dysautonmia Project.  

 

[yogini]

I don't disagree - but I'm just not sure the public will get that.  These days people talk about the mind-body connection to say that you can improve medical conditions like insomnia and blood pressure through things like yoga and meditation.  It implies there is a mental component contributing to the condition.  That isn't the case for POTS, at least for me - and many of us are trying hard to fight that misconception.

[lieze]

This was very helpful. Thank you.

[cmep37]

I think a lot of the problem stems from the public perception of all mental illnesses - people with depression just need to think happy thoughts, people with anxiety just need to relax a little.  Until things change there will always be a stigma attached to mental illness.  I do worry that given there is such a low awareness of dysautonomia that calling it a mind-body disorder will lead to it being seen as something which isn't a "proper" illness.  The public (and even some medical professionals) hear mind/body and believe that means we could improve our health if we only thought positively and tried harder - I wish! 

I do think it's important to recognise the psychological symptoms dysautonomia can cause but it's also important to create awareness amongst medical professionals that symptoms which may appear psychological such as excess sweating, tremor, palpitations, nausea etc. can also have a physical cause.  If I had a pound for every medical professional who told me anxiety or depression was the reason for my symptoms even after I'd been assessed by a clinical psychologist and been told I was no more anxious or depressed than the average person I'd be rich now!