The weekend before I entered junior high school my parents took us to the Great America theme park here in Northern California. It was there that I experienced my first anxiety attack, and I quickly fell down a dark hole of anxiety and depression that kept me confined to my home for almost two months. I felt so alone, and so shameful of my mental health issues. No one, not even the psychologists they sent me to, mentioned that anxiety, depression and other mood disorders are common in people with CHD. It would have made all the difference in the world.
As part of my Masters in Nursing I wrote my comprehensive examination (thesis) paper on the educational needs for pregnant adults with CHD. Specifically, I used nursing theories that focus on coping, and I poured myself into the research done by Toronto’s ACHD psychologist Adrienne Kovacs—the only full-time psychologist working with ACHD in North America. Frankly, the work she’s doing is cutting-edge and opened my eyes to the unmet mental health needs of many of us ACHDers.
It’s been 21 years since that first anxiety attack and today I feel confident in my coping abilities and I’m med free—well, psychiatric med free. I’ve been through many years of counseling, medications, major ups, downs, and emotional walls I had to break through. I’m certainly not free of my anxiety, I just feel more in control—I OWN my emotions. Anxiety is not something I’m ashamed of or something I hide beneath the covers from. I acknowledge it, proclaim it, and seek the appropriate outlets for the emotions. Will I hit more road blocks? Absolutely! The ACHD experience is all about roadblocks; we’re no stranger to that concept. Will I coward away from my emotions – emotions I have EVERY RIGHT to feel? NO!
The problem is, once you get that anxiety/depression/mental health label, it becomes the scapegoat of your medical chart. I know this—I work in the medical field. If symptoms can’t be explained physically then it must be psychological. When I developed post-partum cardiomyopathy and my cardiologist didn’t “see” it on my ECHO, she explained my inability to climb the stairs as part of my anxiety disorder and recommended I see a psychologist. I was dumbfounded—since when did I have a fear of stairs? I was confident in my assessment of my symptoms and knew they were cardiac related, and ultimately I was right, but once an anxiety label gets “stamped on your head” it becomes the easy way out for some physicians. I’ve heard similar stories from some in the CHD community.
Recently, I’ve had several CHD friends endure horrific CHD-related experiences. ”Roadblock” seems like an understatement to what they’re going through. These experiences—experiences like this from our past—and the anticipation that we’ll have to face more of these experiences in the future cause us to have emotions that change our soul. But we have every right, EVERY RIGHT, to feel these emotions.
No one can tell us how we're supposed to process it all, and darn it, we have the right to be a little “crazy” from everything we've been through. We‘re allowed to cry, scream, withdraw, do “bad” things (i.e., chocolate cake anyone?), and throw things. The question is, how do we keep going? How do we put one foot in front of the other, pull ourselves up, and find the strength to allow ourselves the emotions but not allow the emotions to define us?
With proper support! More ACHD programs need to offer psychiatric care—bottom line. We need more face-to-face support groups. We need guides, leaders, and professionals who support us in finding healthy ways to cope with our emotions. Lastly, we need understanding, hopefully through education and research.
To all of my CHD friends—let go of the shame. Let go of the fear of ridicule. No apologies. You have every right to feel how you feel. OWN it! This is normal by all means, even if we don’t feel the slightest bit normal.
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