• arielaaviva

Anxiety and EDS

Updated: Apr 10, 2019

The Ehlers-Danlos Society is trying to address this issue. They recently created this toolbox that I recommend you check out! At the conference in Baltimore, they repeatedly mentioned that mental health challenges should not be swept under the rug, provided coping strategies, and reiterated the value of therapy. Yet each time it was brought up, I could feel a shift in the room. The participants tensed and the presenters became apologetic or hesitant. Anxiety and depression are very real, prevalent challenges facing EDS patients. So why is it so complicated?

For starters, many of us were told our entire lives that all of our symptoms were "simply" mental health issues -- fatigue and chronic pain? Must be depression. Tachycardia, GI issues, and brain fog? Must be anxiety. So when we finally find a real diagnosis that explains our physiology, our reaction is to defiantly proclaim "See?? I told you it's not a mental illness! This is physical and not in my head!" After years, possibly decades, of trying to prove it's not just anxiety, we don't want to face the idea that anxiety might still be part of the picture.

The reality is that living with chronic pain and other symptoms will likely cause anxiety and depression, regardless of your diagnosis. It's hard to not worry about your day or long-term quality of life when you don't know if you'll be in too much pain to function, or if your bowels will explode mid staff meeting. Especially when an illness is unpredictable or has the potential to be progressive, it's tough to not feel impending doom and anxiety looming over you. When you're at the bottom of a flare, unable to work or see friends, no energy for your hobbies, how could you expect to not face depression? And mental health is universally affected by pain and the disruption of sleep, so chronic pain or symptoms that affect your sleep are, on a chemical level, going to increase your risk of anxiety and depression.

But there's something else going on here as well. One presenter showed research suggesting that EDS has much higher rates of anxiety and depression than rheumatoid arthritis -- a disease with similar demographics and symptoms. So what about EDS itself is causing these higher rates? Does it actually alter chemicals and hormones in a way that other illnesses don't? Do the comorbidities, such as POTS and MCAS increase mental illness rates? One physiological difference between EDS and arthritis is that EDS bodies are looser, floppier. Our central nervous system has to increase the sympathetic wing in order to keep us upright, clear-headed, and functional. The sympathetic wing is the fight-or-flight response; it's basically our self-induced anxiety response to keep us ready in case of danger. So is our body causing anxiety because it's the only way to stay upright for a whole day?

Perhaps these rates are also elevated because of falsely diagnosing POTS as anxiety. There may be another, more frustrating, reason though. Rheumatoid arthritis is much more widely accepted by doctors. Perhaps the average 12 years that EDS patients face symptoms before a diagnosis is part of the problem. When you're told for over a decade that your symptoms aren't real, or are told repeatedly that you have anxiety or depression, it's hard to to not develop anxiety and depression as a result of medical PTSD and self-doubt.

There's a final complication that I should note here -- EDS is genetic, but many hypermobile people in EDS families do not actually experience symptoms. This is not well researched, but there seems to be an onset of symptoms for many patients. This onset often follows some sort of trauma -- a physical injury, a virus or infection like Lyme disease, or an emotional trauma. Perhaps EDS is triggered by pre-existing mental illness in a way that arthritis (and other conditions) may not be. This is purely my speculation, but it seemed worth noting.

And finally, perhaps central sensitization and/or hypersensitivity play a role. Central sensitization is the amplification of neural responses to pain, caused by many types of chronic pain. Is it possible that it can also impact mental health? Similarly, HSP (hypersensitivity) may be tied to central sensitization, or may be tied to the constant micro-injuries that occur in EDS bodies and the potential nerve damage accrued, or it may just be a separate issue that some zebras have. Regardless of how it's connected, there is a correlation between HSP and anxiety.

As with everything else in the dizzying world of EDS, it's probably a combination of all of these factors as well as others that have not yet been discovered. The bottom line is that if we truly want to get better, part of that process will most likely require mental health treatment, whether therapy, meds, meditation, or other. What is clear from the research is that anxiety, depression, and general stress play a significant role in increasing our physical manifestations of EDS, and especially POTS and MCAS.

So, while we're fighting for recognition that this is a very real physical illness that is not psychosomatic, we should also recognize the ways in which we could benefit from working on our mental health.

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