Just about every Dysautonomia patient with whom I've spoken over the last few years has, at one time or another, been told that the symptoms they were experiencing were all in their head. Diagnoses such as Anxiety disorders, Depression, Conversion or Somatoform disorders, and even Bipolar disorder are haphazardly applied to patients when no clear aetiology can be discovered to explain their symptoms. Normal reactions to abnormal situations, and purely medical/physiological symptoms are over-pathologised or misdiagnosed with alarming regularity, and to the detriment of the patient.
When unfounded these diagnoses leave a mark on the patient, a wound which if left untended will follow and influence all future relationships with the medical professionals. It also leaves a glaring mark on medical records that will be incorporated into future investigations and the overall diagnostic process. Even when unsubstantiated or proven to be untrue following psychological assessment, it can prove extremely difficult to remove such diagnoses from a patient's medical file.
This is not to say that Dysautonomia patients cannot experience comorbid psychiatric (or medical) conditions. To think otherwise does a disservice to patients. Just as a person can have both Bipolar disorder and Asthma, or Diabetes and heart disease, so patients can have Dysautonomia and Clinical Depression, they are not mutually exclusive. To ignore genuine psychiatric conditions or stressors is to deny patients effective treatment that may alleviate some of their symptoms, something known in medicine as excess disability.
This in no way suggests that Dysautonomia is a psychiatric diagnosis or that it has a psychiatric component. In fact recent evidence suggests that patients with Postural Orthostatic Tachycardia Syndrome (POTS; the most common form of Dysautonomia) experience levels of anxiety comparable  or less than  the general population when ANS symptoms are correctly accounted for. However, given the high rates of Anxiety disorders (in any one year 2,000,000 Australians will experience an anxiety disorder ) and Depression (in any one year 1,000,000Australians will experience depression ) in the general community it would be equally inappropriate for clinicians and patients alike, to ignore their symptoms, or instantly attribute them to Dysautonomia (comparable figures are available for most Western countries). Studies also suggest a strong link between emotional stress and chronic physical illness (asthma, cancer, heart disease etc as high as 28% ) due to the emotional, psychological and social difficulties patients with these conditions face.
There is a still significant stigma with the wider community associated with mental health issues. Adding to this, many patients have had their physical symptoms dismissed as purely psychological by medical professions unfamiliar with Dysautonomia. It is not then surprising when patients are reluctant to seek help or even mention any symptoms that may be interpreted as psychological in nature. This creates a potentially detrimental environment for patients whereby they may be living with high levels of excess disability, not related to their physical symptoms, which may be relieved or at least partially ameliorated with appropriate medications and therapies.
Psychiatric Diagnosis vs Normal Behaviour in an Abnormal Situation
One of the main reasons Dysautonomia symptoms may be dismissed as psychiatric in origin is that many medical professions are unfamiliar with the differentiation between reactive depression and anxiety and Clinical Depression and Anxiety disorders. It is only normal for a patient with a misunderstood chronic illness to feel depressed at times. These diagnoses are life changing. People lose their identity and sense of self. Relationships change or end, careers end, independence is lost, it can be overwhelming at times and patients frequently enter into a specific, and often repetitive, grieving process. Similarly, anxiety symptoms are to be expected in a disorder marked by unpredictability and fluctuating symptoms. Patients are left wondering when the next faint will come? Will they be able to go to the shops alone? Will they make it through a school concert? Or be able to attend a party without throwing up? These emotions and thoughts are an understandable and normal reaction to a confronting and uncertain situation.
There are specific criteria that need to be met before a clinical diagnosis of either an Anxiety disorder eg, Panic Disorder, Generalised Anxiety Disorder (GAD), Post Traumatic Stress Disorder (PTSD) are met. Similarly, Clinical Depression has specific markers which are required for diagnosis. These diagnoses cannot be made in a 10 minute ER consultation, nor are these diagnoses the province of Neurology or Cardiology. These diagnoses require lengthy assessment and review, including the ruling out of medical conditions that can cause these symptoms. Just as you would not seek out a cardiologist to diagnose Parkinson's disease, conversely you would not expect them to diagnose a patient with Clinical Depression. This is not to suggest that these specialities are lacking or incompetent, it is simply the fact that they have a very different area of expertise. If a specialist suspects a psychiatric component is at play they must refer to an appropriate specialist ie a Psychologist or Psychiatrist. As much as many patients feel slighted when such a refer is made, it is, in fact, a sign of a good practitioner. Dysautonomia should be treated from a holistic position and referrals then made to any specialist area that may be contributing to a patient's presentation, either to confirm or rule out that factor.
Confusion can also occur given that traditional psychiatric drugs such as Selective Serotonin Reuptake Inhibitors (SSRIs) have proven useful in the treatment of certain Dysautonomia symptoms. Knowledge that a drug such as Clonidine which is used in the treatment of Panic Disorder, is also highly useful in the treatment of the high blood pressure associated with Hyperadrenergic POTS, is vital for medical and lay people alike, to disspell myths about psychiatric aetiology.
Although there are some medical professionals eager to suspect psychological aetiologies, especially in female patients, many are simply baffled by a patients presentation which fails to meet normal disease parameters. Patients often present with a myriad of vague symptoms and standard medical testing often returns normal results. It behoves practitioners to look beyond the standard testing, when these patients present, and attempt to rule out less common disorders. The medical philosophy of "when you hear hoof beats suspect horses, not zebras", is one that perpetuates illness and increases diagnostic timelines. The reality is that many patients are zebras and it is only through a dedicated effort that many will be diagnosed. It is often only through strong self-advocacy that patients eventually find a diagnosis. Sadly, for many, the effort and support required to successfully self-advocate is not present and for these patients a diagnosis of Depression or an Anxiety disorder may persist and appropriate treatment will remain elusive.
Role of Psychology
A Psychiatrist or Psychologist undertakes lengthy training to differentiate psychological from physical symptomatology, and how the two can interact to create a presentation. What may seem abnormal behaviour to one doctor, may in fact be normal and understandable when accurate psychological assessment is undertaken by an appropriately trained professional.
A Psychologist or Psychiatrist cannot cure Dysautonomia, but they can help a patient navigate the difficult emotional, psychological and social changes that occur as a normal part of living with a chronic illness. Just as we need to take care of our physical health and use a variety of strategies, eg medication, exercise, diet, lifestyle modification, we also need to take care of our mental health to help in dealing with personal issues as they arise. Patients are faced with changes and challenges everyday. Self-image and self-esteem are challenged regularly. Without guidance and support this can be overwhelming. Having a trained professional to discuss these issues in confidence is vital for many. To know that thoughts and emotions are a normal reaction to an abnormal situation or to give a reality check when a patient is catastrophising is essential. Treating the whole patient means teaching ways to deal with stress, personal relations, disappointment and fear, particularly when the medical condition that is creating these issues is not going to disappear, and may be around for many years, or even permanently. Sometimes just to have an independent sounding board to discuss these issues can provide patients with a much needed relief. To seek this help is not a sign of weakness and it does not negate the central physiological component of the presentation. It is simply patients arming themselves with yet another tool to deal with a life changing and complex illness.
Finding the Right Psychologist
For some patients their experience with a psychologist or therapist in the past has been unhelpful or even, for some, negative and they are reluctant to seek another. The reality is that like every profession there are practitioners with different skill levels. Depending on which area they have specialised in, some psychologists may never have dealt with patients experiencing chronic illness. Psychologists with experience in rehabilitation, pain management, health psychology and chronic conditions will be most experienced in dealing with the issues that arise from chronic illness and the life issues patients face. Specific knowledge of Dysautonomia is not necessary to the process, and most therapists will research their patients conditions to better understand what they are facing. Most Western countries have a professional registration body for psychologists. Patients can contact these boards to find an psychologist with the appropriate training for their condition, in their location and in some cases, who provide free or subsidised psychological services.
Patients should not be afraid to ask a psychologist about their training and experience. They are required to be open regarding their professional credentials, experience and the techniques they use. Similarly, it is appropriate and okay, to tell your psychologist when the experience is not working. In some cases, with an honest discussion, issues can be worked through, and sometimes you simply have to end the relationship and find another therapist. Rapport is vital and without this, a therapeutic relationship may be impossible. It is simply a fact of life that we will not always 'click' with certain people. Whilst that may not be as important with your surgeon, whose surgical skills are of primary importance, with psychologist/patient relationships trust and rapport are vital. This cannot always be accomplished for many reasons on both sides of the couch. But when trust and rapport come together the therapeutic relationship can be very successful and provide great help to patients living with a significant amount of stress day-to-day.
Where to from here?
The reality is that the ANS is highly susceptible to stress. Many symptoms of Dysautonomia are the same as those involved in diagnoses such as GAD, and stress and anxiety can make Dysautonomia symptoms worse. It is therefore highly important to pull apart these symptoms and discern which are related to Dysautonomia, which to psychological factors, and which are intertwined. Just as in the general community, not all patients will experience psychological stress or have symptoms that reach a clinical level. However for those that do, it is important that they are supported to get the help they need rather than be too embarrassed or fearful to seek treatment. Teaching patients to identify the difference and treat each appropriately eg a beta blocker for tachycardia and breathing exercises for stress relief, is vital. It is important to understand that psychiatric illness can occur comorbidly with Dysautonomia. That to ignore this factor may, for some patients, deny them vital treatment. Psychological therapies can be useful to help patients cope with the ups and downs of life with chronic illness. Education is key, for both medical professionals and patients alike. The need to increase knowledge in general medicine of the role of the ANS in physical and psychological illness, how they differ and how they can interact is vital to better and appropriate patient experiences. As is the ability to differentiate between normal emotional reactions to the stress of illness and when these cross over to psychiatric conditions requiring specialist diagnosis and care.
To deny that some Dysautonomia patients may have a comorbid psychiatric illness or significant stress is just as damaging as attributing, and sometimes dismissing, all symptoms to a psychiatric aetiology. Somehow both patients and medical professionals need to find a middle ground and only through continuing education and continuing liaison can we do this. Both groups have responsibility to change this situation.
- understand the difference between normal emotions and behaviours and clinical psychiatric diagnoses. Refer to the appropriate specialist as necessary.
- understand the damage that can be caused by flippant or unsupported psychiatric diagnoses.
- understanding that it is possible to report on a patients mood and affect without the leap to a psychiatric diagnosis.
- understand that many of their patients will come with these negative experiences and they will colour and influence their interactions.
- understand that psychology can be an important tool to aid their patients in coping with a difficult chronic illness, not just for diagnostic purposes.
- understand that Dysautonomia in all it's forms is not a psychiatric diagnosis and is a recognised measurable physiological dysfunction, due to multiple, complex aetiologies.
- understand that the majority of medical professionals care and want the best for their patients.
- understand that most do not receive a comprehensive education on the ANS.
- understand that sometimes we as patients need to educate our doctors.
- understand that many medical professionals do not understand the diagnostic criteria required for psychiatric diagnoses.
- understand that it's okay to ask for a second opinion or further testing. Especially if you are not improving or not happy with your diagnosis.
- understand that we too come to these interactions coloured by our previous and often negative experience. At times there may be a clear disconnect between the doctors intentions and our perceptions.
- always try to come to a new appointment with a fresh mind. Sometimes we can be pleasantly surprised.
- understand that psychology can be a useful tool in coping with stress of living with chronic illness.
Essentially, it is a two-way street that we all must learn to navigate. Education, patience and sometimes a thick skin are essential.
Dysautonomia is not a psychological illness. This is now supported by numerous studies which demonstrate no link between Dysautonomia and diagnoses such as anxiety and depression. Psychology and psychiatry can play an important part in the diagnosis and treatment of Dysautonomia. They can be used to exclude psychiatric diagnoses during initial hypothesis/diagnostic testing process. Similarly, they can be part of the holistic treatment process, be it to treat comorbid psychiatric conditions or teaching patients the tools to deal with the emotional, psychological and social consequences of living with an unpredictable and often confusing chronic illness. The identification, treatment and resolution of as much excess disability as possible is vital to effective treatment of any chronic illness. This in no way suggests that Dysautonomia is a psychological illness, although the experience of living with such an illness can create understandable substantial life stress. We need to see beyond the stigma and misunderstanding and view psychology as a possible useful treatment for some patients. Just like the shower chair can keep you upright in the shower, a psychologist may help you stay upright and moving through the challenges chronic illness creates each day.
*My own story. Pre-sick I was working as a Neuropsychologist in geriatric and neurological rehabilitation. I was told that my symptoms were "all in my head" by a General Physician early in 2007. Following tears and anger I was spurred to pursue an accurate diagnosis which I finally received in mid 2007. My deteriorating health forced to leave work in 2008 at which time I began counselling with a fantastic local clinician to work through the personal issues that arose at this time. I continued this counselling for a year. When my cardiologist initially suggested counselling I was insulted and embarrassed, especially being in the field. However, for me it was fantastic and I attribute a lot of my ability to deal with my current health status to this experience.
Psychology is not for every patient, but as with all treatment plans, treatment should be individualised to patient needs. However, if significant life stress or comorbid psychiatric issues are present, psychology may be an important adjunct to overall treatment.
Australian Psychological Society
American Psychological Society
Canadian Psychological Society
British Psychological Society
STARS UK has a great piece on Cognitive Behavioural Therapy (CBT) and Reflex Syncope,which can be found here. If you're not familiar with their site, I highly recommend them as a source of information and support for patients with a wide range of Dysautonomias.
 Wagner C, Isenmann S, Ringendahl H, Haensch, CA. Anxiety in Patients with Postural Orthostatic Tachycardia Syndrome (POTS). 2012 Aug: 80(8): 458-62
 Raj V, Haman K, Raj S, et al. Psychiatric profile and attention deficits in the postural tachycardia syndrome. Clin Auton Res. 2004;14:309.
I have had dysautonomia for 24 years as the result of chemotherapy drugs given to me to treat leukemia in 1988. I wasn't formally diagnosed with dysautonomia until 2007.ReplyDelete
For the first 16 years my symptoms were regularly seen as either an anxiety disorder or panic attacks. There was talk of ordering a tilt-table test, but my doctor at that time never followed through.
It wasn't until I started going to a long term cancer survivors clinic for yearly follow-ups that I finally got the right diagnosis. They sent me to the right doctors who knew what dysautonomia looked like and how it's symptoms could create a feelings similar to, but not the same as, anxiety and panic.
By the way, I am a former clinical social worker who is now disabled by fibromyalgia, dysautonomia and several other chronic illnesses.
I didn't know you were a SW Selena. Seems there are a lot of us in the mental health field who have Dysautonomia. I would love if we could get to a point where doctors recognised what is a mental health issue and what a physical issue. At present we have way to many patients in your position of waiting years for correct diagnosis and I hate to think how many who never have the luck to find that someone to point them in the right direction.Delete
Bravo. Dysautonomia is not the same as anxiety/depression - but they are not mutually exclusive in any way. I worry that many are left trying so hard to prove they don't "just have anxiety" that they don't get proper treatment, as there is nothing shameful about anxiety/depression- especially when dealing with chronic illness. I was told for years, like many others, it's In your head, just panic attacks, etc...with no history of these- and have developed anxiety as a result (when it comes to medications and new doctors at least!). Anyways, excellent job, thanks for presenting it so well!ReplyDelete
That's my worry to Claire. A culture has developed where patients are afraid to express that they aren't coping or may have worrying thoughts because the "mental illness' tag may be applied. And for many that instantly takes away any legitimacy to their physical symptoms. It makes me angry as a psych as having worked with patients and families I know how high the incidence of stress and mental health issues are in carers and patients alike thanks to the difficulties of living with physical disability and illness. Being able to take care of that part of their lives made a huge difference in their ability to cope with the physical and life changes. Bah. We've had this conversation before so I know you know what I mean, but it gets very frustrating when I see some patients telling other patients not to seek help that they may desperately need.Delete
Great article! It's very well researched and presented...we zebras have way too much time on our hands sometimes, don't we? :) It's always nice when we can do something productive with that time. Everything you wrote is so familiar. It took 5 years for me to be diagnosed with POTS, and I'm kind of an atypical presentation, so I still get the "it's all in your head" treatment from time to time, even with all the medical records proving otherwise. I think I might want to print this out and keep it in my purse for the next time that happens. I'm a firm believer in getting a good psychologist or counselor of some kind. There's so much emotional stuff that comes with this that we need someone to help sort it all out. Great point about how mental health issues are not a part of dysautonomia, but can still in occur in dysautonomia patients just like the general population. It could be so easy to overlook these or dismiss them as part of the dysautonomia...which would be the opposite of our usual problem. I'm guilty of hiding anxiety symptoms and an OCD tendency, just because I'm afraid that if I show or admit to any of those, it'll strengthen the opinion of those who think all of this is all in my head (if one of those people can prove me that a psychological issue can make your heart rate drop into the 20's, maybe I'll be more willing to listen to their suggestions). Anyway, great article. Keep writing--it's so important to increase awareness of dysautonomia and the issues that can come with it!ReplyDelete
So true Anon. The emotional side of any illness is often the hardest part to deal with thanks to all the baggage that comes along with admitting that you're not coping or need a hand. Many cannot separate a normal response to a stressful situation and mental illness. Not that there should be stigma if someone does have a mental illness. It really is far more common in the general population than most people think, so it only stands to reason that some Dys patients, or cancer patients, or arthritis sufferes, or...would also experience a psych illness. Now to get the medical profession to truly understand that although living with Dys can cause mental health issues, it in and of itself is not a psych condition. We can always hope :)Delete
Comorbid and ameliorated? You've still got it--brain fog or not!ReplyDelete
It took me 5 1/2 years, 15 doctors and a bazillion dollars to get my POTS diagnosis in May. That diagnosis came from a new doctor looking at a 2009 tilt table test. Oh, how ticked, resentful and vindicated I felt. I had asked the doctor who had given me the tilt table test and 2 others if I had had POTS POINT BLANK. The answer was," No." not, " I don't know." Humph.
But the thing that still sticks in my head is a comment that my husband's neurologist made to me during our first visit. "Do you think you might be, um, just unmotivated?" Without a penis, I was unable to come up w/ that on my own evidentally. "Why, I never thought of that! You know, being lazy by lying on the couch all day, I HAVE been watching my 7 year old's life go by... Thank you, oh, thank you, Omnipotent One! I will surely get off the couch now!!!"
Anyway, I wonder how many of us were in "helping" fields at the onset of our conditions? I was a special education teacher, you were a neuropsychologist, and Selena was a social worker. Hmmm...
'Unmotivated" OMG I would have slapped him. How is that helpful? It's amazing how those comments stick, even years later when you have a diagnosis. I know I still get angry when I think about the general physician who told me it was all in my head. I honestly don't think they realise the impact those comments have. It leaves most of us hypersensitive for any remark or action that may even hint at a mental health aspect or delegitimising of our experience.Delete
PS I was impressed I could still spell ameliorated!
It is amazng what some doctors say. I was collapsing in the shower, and a doctor said do you think it is due to showering. I said, don't know , but I have been showering for 50 years! I also got the question of, do you think you are depressed. I said it was depressing trying to figure out for months, why I can't stand up.Delete
Oh my, what a blummin' brilliant post hon'. I think that this should be sent out to every doctor and every patient to keep us all ticking along together. I love this so much that I have not the words :-DReplyDelete
Thank-you for putting this together, xx
Aw thanks babe. xxDelete
brilliant post michelle. hope your feeling ok with being in hospital this past week.ReplyDelete
im fighting the fight at the moment with my medical records. im not going to sit by and have 20 years of misdiagnoses scrawled across them. the one thing i have on my side at present is time. i know this is going to be a long battle, however its one i feel passionate about. i saw my mp (yep not gp) and he is helping to get the damn incorrect dx changed.
if my primary dx would of been physical, the predjudice wouldnt of occured. i would of be dx sooner. feeling ill and not being able to fight my corner resulted in years of being left to deal with POTS and EDS on my own.
i think the little red sparklies need to rest on my toes for a while to
bring some cheer to me.
take extra care of yourself. xxx
I hope you can get it changed Em, but I know how hard it can be. As you say at least you have time to do it. The prejudice that comes from a mental health diagnosis is astounding. It colours all interactions with other medical professionals and far beyond what it should even if that actually was the main issue. That it means patients are missing out on appropriate health care is appalling. The idea of comorbidity isn't new, but many doctors seem to forget it once any mental health issue is raised. That is something we need to change on top of an accurate recognition of Dysautonomia, EDS and all the other zebra illneses.Delete
Go the red sparklies. They have magical properties.xx
I really like this blog post. It is relevant to anyone with a chronic illness. In medical appointments I am like Mr Spock - everything coolly and rationally stated with no emotion - for fear of not being taken 'seriously' enough. But, of course, even if we're without worry for a period, along comes New or Worrying Symptom and kicks us in the metaphorical goolies again. Naturally, it is stressful being sick - especially as we can to accommodate the illness in every aspect of every single thing we do. Man, that's tiring. Especially if we're already tired. Oof, I'm waffling. Good post! - JaneReplyDelete
I agree it goes beyond Dysautonomia. The system isn't set up for complex or chronic conditions and the ideas of legitimacy and seriousness are always weighing on our minds. I know early on there's no way I would have admitted I wasn't coping with everything. Now I don't care what they think and I'm lucky enough to see a cardio that works more holistically so it's not so much of an issue. Sadly I'm still surprised when I meet a specialist who truly gets the emotional toll of chronic illness but doesn't make you feel less for it.Delete
i love your article its so interesting..i really agree with it..i am also experiencing of being depressed and its really hard to cope up but i am glad that some of my friends and also my family are trying their best to help me in coping up with my problem..ReplyDelete