May is Ehlers-Danlos 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.
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 goes unspoken about, 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 that if we don’t talk about it, to 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 OCD, 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 (CBT) growing up. I also live with Hypermobile Ehlers-Danlos Syndrome and many of the co-morbid conditions that tend to accompany it.
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 you often aren’t able to do the things you used to do, and likely have more limitations than you once did. There is a grieving process involved if your illness came on or worsened quickly. Additionally, having to make changes in things that people tend to use to define themselves, like employment and hobbies, can leave you feeling worthless. Finding your new (chronically ill) self is a process, and doesn’t happen overnight. If you also find yourself regularly cancelling plans with friends, you will likely hear from them less often. All of these things and more can trigger depression and anxiety.
Being chronically ill also requires that you keep a close watch on how you are feeling and what you do that could possibly improve or worsen symptoms. Variables include but are not limited to: medication, diet, and activity level/exercise. Tracking how you are feeling in accordance with what you put into your body, and what you ask from it, is valuable because it can help you learn what your 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 you truly have over your illness can be an all too real trigger for anxiety and depression.
Second, some of the medications prescribed to help with chronic pain (as seen in many chronic illnesses including EDS, Fibromyalgia, and chronic migraine) can have psychiatric side effects. I feel that this trigger for anxiety and depression in chronic illness patients is even less talked about than the emotional impact of chronic illness itself. Maybe it’s because this reaction is uncommon, but 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 that 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 are real. If I didn’t have the support system that 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 that I am not alone in this.