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Anxiety. Depression. Panic Attacks. OH MY!

Aug 10

Posted by: ACHA
8/10/2012 12:03 PM  RssIcon

By Christy Sillman

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.

Christy Sillman was born with tetralogy of Fallot with pulmonary atresia and now works as a pediatric ICU nurse. She is passionate about working with both children and adults with congenital heart disease. Christy writes a weekly column on her experiences as a nurse, ACHD'er, and new mother, which you can read at by clicking here.

Location: Blogs Parent Separator ACHA Blog

5 comment(s) so far...


Re: Anxiety. Depression. Panic Attacks. OH MY!

Christy!!! THANK YOU!!! I know you know this Christy, but it was our meeting in January and your strength to "own" my fears that has allowed me to actually save myself!! I felt so battered from years of being labeled (and this from an experience 20 years ago!!) that it caused me not to seek the appropriate heart care. I could have easily died 3 weeks ago. When I had my major arrythmia event. But it was your words and strength that got me to call UCSF and find help. And now, for the first time EVER, I am saying out loud my true anxieties. I am not as ashamed of them. And my experience at UCSF has been VERY good. And yet even still when I made the comment to my new EP doc about others having fear or anxiety around the kind of things i had just experienced. (3 cardioversions and 1 while awake from Vtach) he said, "no...not really...." I was dumbfounded. Because that is NOT what I hear directly from all my CHD friends. But for the first time in my LIFE I did not feel badly about having made the comment or gotten his answer. There was still compassion in his eyes and I felt no judgement. My thought was "gee....maybe no one actually tells him how we really feel! I know I had never before!" well....not true....I did attempt to tell my previous doctor and it came out all mixed up and not right and the receiving end I felt judgement and complete inability of understanding. A very scary place to be sitting on the receiving side of that kind of reaction when I must then put my LIFE in their hands. So my thanks go out to the new generations of medical professionals, christy, all my friends on FB, and the ACHD community for working hard to realize we can become overwhelmed with fear and anxiety so please don't Mis take that as "bat s**t crazy." We are stronger than most. And it is about time to start believing it for ourselves. Thank you Christy!!

By Kristen on   8/10/2012 1:22 PM

Re: Anxiety. Depression. Panic Attacks. OH MY!

Wow, Christy - hats off to you for a great blog entry! Although a lot of my symptoms subsided as I got older, I was still left with lots of emotional stuff from my earlier childhood experiences with doctors, illness, operating rooms and dire predictions.

And I could never figure out what the heck was wrong with me! After all, my physical condition had improved considerably, right? What on earth could still be bothering me (I thought)?

Anyway, now that I'm getting older (53) and back under the regular care of a cardiologist, I'm finding a lot of those old troublesome feelings resurfacing. Your words are a huge help.


By Maron on   8/10/2012 3:31 PM

Re: Anxiety. Depression. Panic Attacks. OH MY!

Thanks for posting this. I suffered from bouts of depression beginning in my early teens. I got so tired of people telling me to " just snap out of it ". As a child I had major learning/behavioral issues that went unchecked until I was in high school. I finally got therapy in my 30's and also became more educated on what living with CHD can do.

I am now 52 and can deal with life so much better. Thanks for speaking out.

By Michelle on   8/13/2012 7:50 AM

Re: Anxiety. Depression. Panic Attacks. OH MY!

Thanks for sharing guys! I'm another 51 ;year old - been there done that, shaking the label....Cindy

By Cindy on   8/20/2012 8:39 AM

Re: Anxiety. Depression. Panic Attacks. OH MY!

Thank you for your blog...everything you said and others too, is so true. Here is a bit from an article about PTSD, re. 9/11 that I wrote in my journal that I feel sure we all can relate to: "Symptoms of PTSD may not develop immediately. The survivor of one trauma may be scarred but not broken by her first experience, but that wound may reopen in response to a fresh trauma....It has to be remembered that a person's response to trauma is defined by the lifetime of experience she brought to the event."

By Toni Smith on   8/29/2012 8:00 AM

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