The Interaction Between Chronic Illness and Mental Health No One Talks About

May is Ehlers-Danlos Syndrome Awareness Month and Mental Health Awareness Month. This month also contained an awareness day for fibromyalgia and chronic fatigue syndrome, both of which I’ve been diagnosed with along the way.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

In honor of all of these events occurring in May, I would like to go on the record about a side of chronic illness that people often don’t talk about: the interaction between physical and mental illness. I believe this often goes unspoken because the general public so often gets it wrong. They tend to believe that if we experience anxiety or depression (or both), then our physical illness must be psychosomatic, or “in our heads.” I also believe if we don’t talk about it and set the record straight, then people will never stop saying these things.

I am a person living with both physical and mental illness. In childhood, I was diagnosed with obsessive-compulsive disorder, generalized anxiety disorder, and major depression. For the most part, these conditions are well-managed with medication and tactics I learned in cognitive behavioral therapy growing up. I also live with hypermobile Ehlers-Danlos syndrome (EDS), a genetic connective tissue disease that impacts all of my body systems and causes chronic pain. EDS can come with many co-morbid conditions, and for me that includes fibromyalgia, chronic migraine and chronic fatigue syndrome.

I want to make it clear that while my mental illness did not make me physically ill (my genetics took care of that one for me), my physical illness does make my mental health infinitely harder to manage. The reasons for this are two-fold:

First, being chronically ill can create feelings of depression and anxiety even if you have not already been diagnosed with these conditions when you become sick. Being sick means that I often am not able to do the things I used to do, and have more limitations than I once did. There is a grieving process involved for many people whose illness came on or worsened quickly.

Additionally, having to make changes in things people tend to use to define themselves, like employment and hobbies, can leave you feeling worthless. Finding my new (chronically ill) self is a process, and doesn’t happen overnight. If you also find yourself regularly canceling plans with friends, you will likely hear from them less often. All of these things and more can trigger my depression and anxiety.

Being chronically ill also requires me to keep a close watch on how I am feeling and what I do that could possibly improve or worsen symptoms. Variables include but are not limited to: medication, diet, and activity level/exercise. Tracking how I am feeling in accordance with what I put into my body, and what I ask from it, is valuable because it can help me learn what my body needs to function and what it can and cannot tolerate. Unfortunately, it can also result in feelings of anxiety about when symptoms will worsen, and self-blame when it inevitably happens. Regularly documenting, and therefore being aware of how little control I truly have over my illness, can be an all-too-real trigger for my anxiety and depression.

Second, I know from experience that some of the medications prescribed to help with my chronic pain can have psychiatric side effects. I feel this trigger for anxiety and depression in chronic illness patients is even less talked about than the emotional impact of chronic illness itself. I know from online patient communities that I am not even nearly the only person to have this experience.

During my adult life, my medication has made me suicidal on three different occasions. Thankfully, I have never made a suicide attempt. This is largely because I have been able to realize it is my medication making me feel that way (thanks to all that tracking) and reach out to family members and my doctors for help. Some are not so lucky.

After weathering three episodes of major depression with suicidal ideation brought on by the very medications that were meant to treat my condition, here is what I want people to know: The risks these medications present to me are real. If I didn’t have the support system I do, I might not be alive to write this today. I am by no means suggesting that patients should not have access to medications that treat neuropathic pain. They help people (including me — I finally found one that doesn’t do this to me).

I only want others to know that while my physical illness is very real, and not remotely all in my head, the reality of living with it and the available treatment options have made maintaining my mental health a much larger struggle then it would have been otherwise (not the other way around). I am willing to bet I am not alone in this.

If you or someone you know needs help, see our suicide prevention resources.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

Follow this journey on Zebra Writes.