Darcy’s Blog: When Mental Health Issues Go Unnoticed

Happy #WorldMentalHealthDay!!! One of the best days of the year!!

Gunnar likes to describe the three pillars of CF care as:

  1. Respiratory Care
  2. Gastrointestinal/Nutritional Care
  3. Mental Health Care

If one of the three pillars are not being addressed, health as a whole suffers.

But let me tell you, Gunnar did not always think this way. When he and I first started dating a few years ago, I had just assumed he had some mental health treatment in his lifetime. To me, living with a progressive terminal illness is grounds for a person to have some mental/social/emotional health issues. But no, “I’m totally fine,” Gunnar would always say. And he was, mostly. He had never had any sort of mental health treatment in his life, nor had he ever worked with a child life specialist. And yet, he had effective ways to get his mind off of CF struggles (eg. Video games, sports, a great support system). However, I also noticed little indicators that he might be struggling inside. For example, he was extremely hard on himself and held himself to unreasonable standards (eg. Working really hard, even when he was sick). He would get frustrated easily (eg. Getting a little bit hot-tempered when playing video games, when the game was cheating). He was hypervigilant about possible medication side effects, fueled by anxiety that would be unable to use certain antibiotics. He expressed guilt about our relationship. He would have nightmares about having a lung transplant.

As a nagging girlfriend mental health professional, I urged Gunnar to talk to his social worker at his clinic. He did, and it was great. When Gunnar finally sought help from his care team, I noticed a big shift in his ability to express his emotional needs and identify new coping strategies. I don’t see him deal with quite as much frustration, guilt, and anxiety as I used to. And if those issues arise, he now has the tools to deal with it at home or with his care team.

The reason I want to bring this to light on #WorldMentalHealthDay, is that Gunnar’s mental health struggles largely went unnoticed. Invisible illness was really living up to its name.

The CFF-recommended tools for assessing CF patients for mental health issues are the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder 7-item (GAD-7). These are fantastic, reliable tools that I use in my practice as a psychotherapist all of the time. BUT. These are diagnostic tools that are modeled after the Diagnostic and Statistical Manual of Mental Health Disorders definitions of Major Depressive Disorder and Generalized Anixety Disorder. If Gunnar were to be assessed with one of these tools he would score a 0.

0 means no-minimal symptoms of Major Depressive Disorder or Generalized Anxiety Disorder. This is because Gunnar does not have a mental health disorder. Yet he still has mental health symptoms due to living with chronic illness.

I am on a crusade to 1) Encourage the design of illness-specific mental health assessment tools and 2) Educate patients and families that a lack of a mental health diagnosis does not equate to lack of mental health issues.

Living with a chronic illness is stressful, am I right!?

If you, or your child, or your significant other, or your friend is having any anxiety, irritability, sadness, boredom, guilt, etc… validate them! The struggle is real.

Talk to your care team about it. And be specific! “My son with CF and my daughter won’t stop arguing.” “I find it hard to do my treatments after a long day of work.” “My friend with CF is getting sicker, but I’m stable, and I feel guilty about it.” “I keep having nightmares about getting a PICC line.” These are all (treatable) mental health issues, even if they don’t sound like “I’m depressed” or “I’m anxious.”

Your care team might have the resources to help you within the clinic, or they may refer you to someone outside of the clinic. They might recommend a specific kind of mental health treatment, or you may find that just getting these issues off your chest in one sitting is enough to help you.

Either way, I urge you (like I urged Gunnar) to not let mental health issues go by the wayside, even if such issues don’t meet the clinical standards for a mental health diagnosis.

Caregivers – this goes for you, too! I know it’s not easy watching a loved one struggle.

With a little help, every one of us can feel a little better. That is what #WorldMentalHealthDay is all about!