Psychological Management & Involvement with EDS/HSD · Panic Disorder, Social Anxiety Disorder, Specific Phobias, or Generalized Anxiety Disorder. It makes sense that anxiety is an

For this session last year and the year before, Dr Bulbena, the lead author of the Psychiatric and Psychological Aspects in the Ehlers-Danlos Syndromes has reviewed the findings reported in that article at the conference and combined it with his clinical observations from treating people in this population. This year we are doing something a bit different.

We are going to take a look at that article and a range of articles that have been published since then looking at mental health issues in relation to EDS/HSD and other chronic illnesses.

Next we will look at the main mental health care issues people seek treatment for.

Finally we will talk about the role of mental health support in a comprehensive EDS/HSD management program.

Since the publication of the revised EDS/HSD classifications in 2017, we have been cognizant of the fact that EDS/HSD is a multidimensional chronic health condition that should be assessed and treated as such by clinicians treating this population.

We enlisted the help of a medical research writer to identify some more articles that may provide insight into the mental health issues faced by this population.

Take note of those ”Key Words” listed.

If you are inclined to research more on this topic, consider starting with these Key Words. The next couple of slides add in a few more Key Words you may want to consider including in your search.

New research has frequently been published showing a direct connection between chronic illnesses and psychological issues.

Here we added Psychiatric Disorders to the key words we were searching for.

Sometimes replacing the keywords Ehlers-Danlos Syndrome or Hypermobility Syndrome with “Chronic Illness” will yield more insight into the issue.

As in this article which takes a look at the link between multi-morbidity or multidimensional chronic illness and depression.

Adding in keywords like inflammatory disease brings more results along the same lines. We won’t show you every article we’ve read in the last few weeks because they all lead us to the same place.

New research consistently shows a direct connection between chronic illnesses and psychological issues.

It sucks to be sick. This takes a toll on mood and mental health. There is a clear need for mental health support in this population.

Research shows there is a relationship between chronic illness,including EDS/HSD, and mental health issues.

We may fear the misdiagnosis of EDS/HSD symptoms as instead being some mental illness. We may feel like we are being dumped out of physical healthcare and into mental healthcare. We may be disappointed that a doctor seems unwilling to treat EDS/HSD. Anger, frustration, disappointment…these emotions should not stop us from seeking out mental health support.

Associated mental health issues may make physical symptoms worse so we should be looking for multi-dimensional care that includes both physical and mental health diagnosis and treatment that distinguishes between physical and mental sources of symptoms. It is also important to acknowledge that it is possible to have anxiety with BOTH a physical and a mental source.

This is where we put in a plea for the upcoming generations of researchers to include mental health assessments in future research of the conditions affecting this population. All of the research projects, I believe are an opportunity to include a mental health assessment to further document the link between the physical health and mental health issues.

This paper includes a description of Neurodevelopmental Attributes in the population of joint hypermobility and related disorders (like EDS/HSD). The list of Neurodevelopmental Attributes includes Attention Deficit/Hyperactivity Disorder, hypotonia, and motor delays which are all things that would bring a person to a mental healthcare professional for assessment and management on its own which is why this item was added to the list on the previous slide.

Research discussed so far shows that there IS a link between chronic illness and mental healthcare disorders.

For many in the EDS/HSD population ”The Psych Referral” was one obstacle to receiving a diagnosis of a physical condition because that dreaded referral was all that was offered. Over and over and over again. Especially for women and minorities.

Yeah, I can feel your blood boiling from here. So let’s all take a deep breath and release the tension in those balled up fists so we will be able to look at these conditions a little more closely.

I’m going to hand the mic over to Maggie who will talk about some of the mental health issues mentioned so far.

First up is Anxiety. Defined as “a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome.” Or “a nervous disorder characterized by a state of excessive uneasiness and apprehension, typically with compulsive behavior or panic attacks.”

From the list of symptoms it is clear that a person with these symptoms should be screened for physical illnesses that may explain the symptoms.

Anxiety is a hot button word with this crowd because Anxiety is both a mental health issue AND a physical health issue. Anxiety is one of the things that happens in the Dysautonomiapopulation because of the fight/flight response that is triggered by the fluctuation of heart rate. We won’t attempt to explain the details relating to Dysautonomia and instead defer to Dr. Satish Raj and Dr. Pocinki .

Everyone feels anxious now and then. It is completely normal to experience anxiety at some time like before taking a test or making a an important decision.

Anxiety disorders are a group of mental illnesses, and the distress they cause may disrupt your life. Constant worry and fear can be overwhelming and disabling. Other labels for this condition include Panic Disorder, Social Anxiety Disorder, Specific Phobias, or Generalized Anxiety Disorder.

It makes sense that anxiety is an issue in this population. Think about anyone who experiences a series of negative events. That person is going to be on the lookout for the next bad thing coming up. This puts them on alert. For anyone with a chronic illness repeated medical appointments may affect them similarly to having to take a final school exam after missing half of the classes. Over and over again.

Note that the treatment options include are an integrative list.

A mood disorder that affects how you feel, how you act and how you think. If symptoms last longer than two weeks, a diagnosis of depression is considered.

As always, clinicians would screen for medical conditions such as thyroid problems, brain tumor, vitamin deficiency.

According to the American Psychiatric Association

Eating disorders are illnesses in which the people experience severe disturbances in their eating behaviors and related thoughts and emotions. People with eating disorders typically become pre-occupied with food and their body weight.

This is a Figure from the first article we mentioned in this presentation. It is the article in the 2017 classification by Bulbena, et al

There are a variety of eating disorders within this population that are glossed over or not acknowledged. Dentists may focus on treating TMJD or doctors may focus on the allergies/intolerances without realizing that this other stuff is happening until it is adversely affecting the patient’s total health.

Fear of eating stemming from the known difficulty with eating/digestion in the EDS/HSD population may lead to anorexia, depression may lead to over eating, etc.

Usually mentioned in the context of pain.

Step 1: Predict a negative outcomeStep 2: Jumping to the conclusion that if the negative outcomedoes in fact happen it will be a catastrophe.

“Why should I bother, it will only get worse, and then I will be even more miserable.”

Catch yourself having cognitive distortions.Consider other possible outcomesDistinguish between significantly unpleasant and catastropheIncrease your perception of your ability to cope.

Catastrophization Is an amplifier of pain/symptom perception.

According to the Castori & Hakim mentioned earlier in this presentation when these symptoms are present in children a full differential diagnosis needs to be pursued. Again, it is possible to have these issues and not have EDS. If any of these issues are present, the patient will benefit from both mental health and mental health working with them.

Attention-deficit/hyperactivity disorder (ADHD) is one of the most common mental disorders affecting children. ADHD also affects many adults.

Symptoms of ADHD include inattention (not being able to keep focus), hyperactivity (excess movement that is not fitting to the setting) and impulsivity (hasty acts that occur in the moment without thought).

Posttraumatic Stress Disorder (PTSD) is a psychiatric disorder that can occur in people who have experienced or witnessed a traumatic event such as a natural disaster, a serious accident, a terrorist act, war/combat, rape or other violent personal assault. Repeated unsatisfactory healthcare experiences have been noted as a root of PTSD in people with chronic illness.

People with PTSD continue to have intense, disturbing thoughts and feelings related to their experience that last long after the traumatic event has ended.

They may relive the event through flashbacks or nightmares; they may feel sadness, fear or anger; and they may feel detached or estranged from other people.

People with PTSD may avoid situations or people that remind them of the traumatic event, and they may have strong negative reactions to something as ordinary as a loud noise or an accidental touch.

There is a higher rate of suicidal thoughts with certain mental illnesses. That does not mean that everyone with mental health issues has suicidal thoughts or acts on those thoughts.

Through research we know that people who have made suicide attempts think differently when in a suicidal state. Their pain and desperation affect their ability to make decisions. Their brain isn’t working flexibly, and they can’t generate alternate solutions. They are hurting—they truly believe they are a burden and their pain will never end.

Reach out to those in your life who exhibit warning signs or who have risk factors.

There is no single cause for suicide.

Depression is the most common condition associated with suicide, and it is often undiagnosed or untreated.

Having lost an uncle and a brother (as well as about a dozen friends/acquaintances) to suicide I can share that our extended family rule is “Be Kinder Than Necessary”

Chronic illness is a risk factor for suicide so …

Is anyone surprised by the main finding of this article?PAIN

There is a very large body of research showing definitive links between pain and mental health issues including those that we have discussed here today.

For many years, people with a chronic pain condition have been limited to managing pain with things covered by health insurance; pills and procedures. Thus, not all pain management tools were made available to every person living with pain.

Shouldn’t we be using every available tool to manage pain? Each tool reduces the perception of pain a little bit. Maybe it isn’t noticeable if only one treatment tool is considered at a time. In combination 4, 6, 8 or more things together may improve the person living with pain’s ability to participate in life.

Let me be very clear here that we am not advocating that pills or procedures should not be used for pain management. We ARE saying that every person with chronic pain should have Comprehensive Integrative Pain Management.

The Ehlers-Danlos Society is one of the organizations participating in the Integrative Pain Care Policy Congress. This group has reached a consensus that “Comprehensive Integrative Pain Management includes biomedical, psychosocial, complementary health, and spiritual care. It is person-centered and focuses on maximizing function and wellness. Care plans are developed through a shared decision-making model that reflects the available evidence regarding optimal clinical practice and the person’s goals and values.”

At first we may think that the only things missing from the toolbox are things often termed “complementary” like acupuncture and massage. What about the mental health treatment options?

This article from 2007 does a deep dive into the Classical Type of EDS and shows that the concept of linking pain and mental health issues is not new or a fad.

Whether we are considering recent or older published research, it is clear that we should be asking for the referral to mental health services in order to access more of the pain management tools.

We should be viewing the referral as a golden ticket. It could unlock a bunch of symptom management and coping options never before offered to us.

Do you research and educate yourself about what treatment options/services offered by mental healthcare professionals; CBT, talk therapy, Bio-Feedback, Guided Imagery, Communication training, etc.

If nothing else, if you accept the referral and show up for the appointment, other clinicians may stop referring you.

Learning new pain management techniques like mindfulness, bio-feedback and guided imagery may be just enough to bring you back to participating in life instead of watching it go by.

Mental Healthcare clinicians may become advocates for you with other doctors. You have the option of giving the clinicians to discuss your case.

It is an opportunity to practice how to talk to other clinicians and hone your communication tools with increased confidence. This means you will be a better self advocate in the healthcare system.

Finally, talk therapy may be the platinum ticket we never knew

we needed to sort through this overwhelming and often complicated chronic physical health condition.

Sometimes we just need someone to hear us out so that we can get out of our own heads.

Anecdotally—EDS/HSD patients can be particularly averse to talk therapy, while for some others dealing with mental health issues it is the most desirable intervention: hardest to obtain, most sought after.

Many thanks to all of you for being here this weekend. Many thanks also to the the colleagues and friends who contributed to this presentation for their patience, understanding and their generosity.

We hope that we have encouraged you to think about ways to include the offerings Mental Health Care into your overall healthcare management program.