Mental Health Insights

By Jeannine Ricci

Last month brought awareness to not only cystic fibrosis but also mental health.  This is fitting since it’s estimated that CF patients are 2-3 times more likely to suffer from anxiety or depression when compared to the general population.

I haven’t escaped this statistic; I’m one of the estimated 19% of CF adults that struggle with depression and one of estimated 33% of adults that struggle with anxiety. Choosing this topic wasn’t easy. Although it’s not something I hide, having hundreds of readers know my personal mental health battles is daunting, so I’ll keep this post more informative than expressive. Another deterrent was the idea of writing an article could sometimes suggest that you’ve overcome an obstacle and want to share your tools for success. Truth be told, anxiety and depression are still very present in my life and I’m far from being on the other side. Despite these hesitations, I decided to go ahead and choose this topic that is uncomfortable to talk about because that’s the only way to remove the stigma of mental illness– acknowledge and validate it and by doing so, reassuring those challenged by it that they are not alone.

I decided to hone in on 3 insights that I hope to be beneficial for others to hear; this benefit will be defined by impact and not by number of people helped because I’ll be writing about topics that only the minority of those with anxiety and depression can relate to. But reaching this minority is so important because as I can personally attest, it’s such an isolating place to be.  

Insight #1

As counterintuitive as it seems, improved mental health does not always follow improved physical health. Having a disease altering medicine, such as Kalydeco, change the trajectory of your disease may lead to confusing, conflicting emotions, sometimes even leading to worsening of anxiety and depression. When the burden of CF is lightened, other issues that you didn’t have the mental energy and strength to cope with may begin to surface. There can be many facets involved, including regret about past decisions made based on a now altered blueprint of your future, shift in identity, and survivor’s guilt to name just a few. My guess is this is a response shared by a small minority and I don’t expect most to understand as it’s taken me years to delve into the complexities. My goal in sharing isn’t so much to explain to those who can’t grasp how emotional healing doesn’t always accompany physical healing as it is to reassure those reading that have had similar struggles to know that you aren’t alone. I hope that this knowledge in and of itself will bring you comfort.

Insight #2

Panic attacks can lead to symptoms beyond the well-known fight or flight symptoms of increased heart rate, hyperventilation, dizziness, nausea, tingling sensations, sweating, and tremors. They can also cause feelings of being detached from your body and/or surroundings. This is called depersonalization and derealization.

In other words, panic can lead to the terrifying, deeply disturbing feeling that you are going insane. It’s a symptom that’s rarely talked about even though it’s been reported to occur in about 40% of panic attacks. The distress that comes with the feeling of losing touch with reality contributes to the panic cycle and heightens feelings of intense fear. Having the knowledge that this is a temporary symptom and is your body’s defense mechanism built in to protect you will hopefully help to deescalate feelings of anxiety and loss of control when in the midst of a panic attack.

Insight #3

Think outside the box for treatment strategies when conventional treatments aren’t effective for depression.  

For most people, treatment for depression is highly effective. It’s estimated that between 80 to 90 percent of people with depression respond well to traditional treatments such as counseling and/or antidepressants.

But what about the 10-20% of people who aren’t responsive to these treatments?  Becoming your own advocate and researching alternative treatments is crucial to finding a treatment that may benefit you. One such treatment is Transcranial Magnetic Stimulation (TMS). TMS was FDA approved in 2008 for treatment of major depression in adult patients for whom traditional therapies have failed or for those unable to tolerate the side effects of antidepressants. TMS uses a magnetic force in an effort to stimulate areas on the left side of the brain that are usually less active in depressed patients. It’s generally well tolerated and covered by most insurance companies. Its success rate in lessening depressive symptoms in those with treatment resistant depression is about 58%, with a remission rate (total cessation of depressive symptoms) of about 37%. A word of caution for those who have a diagnosis of both anxiety and depression: as TMS lifts your depression, you might have an increase in your anxiety symptoms. Discuss this with your doctor prior to starting and ask if they have a plan should this occur. Some doctors will alter their protocol and administer treatments on the right side of the brain simultaneously to counteract this issue.

My hope is that this post will help someone in their battle against anxiety and depression whether it is through lessening feelings of isolation, alleviating some of their fear, or delivering a flicker of hope where there was none.  

Mental health resources:

Cystic Fibrosis Research Inc. (CFRI) support programs: Psychosocial Support Programs & Classes

TMS information (note: this website doesn’t have up-to-date information on TMS providers. Check with your insurance company to find an in-network provider): What is TMS

Headspace: https://www.headspace.com/

MindShift-CBT: https://anxietycanada.com/resources/mindshift-cbt/

Catastrophizing and Cystic Fibrosis: Fear of Breathlessness Impacts Quality of Life

By Carisa D. Brewster

A new study has found an association between the cognitive process of breathlessness catastrophizing (BC) and poor health-related quality of life (HRQoL) in patients with cystic fibrosis.

Breathlessness is common in patients with cystic fibrosis and does impact HRQoL, even when pulmonary function is in normal ranges. Catastrophizing is a cognitive distortion where irrational thought patterns dominate, and the worst outcome is expected regarding a real or anticipated issue.

Advances in treatment have increased life expectancy for people with cystic fibrosis, but there remains a need to better examine and understand the psychological issues related to quality of life, according to researchers of this study.

“Following in the footsteps of other researchers who have begun to examine breathlessness catastrophizing in respiratory populations, such as those with COPD, we were curious to examine breathlessness catastrophizing among adults living with cystic fibrosis and how it relates to quality of life,” Danijela Maras, MA, lead researcher and doctoral student in clinical psychology at the University of Ottawa, told MD Magazine®.

Participants were recruited from a small observational cohort within the pilot project, “The Ottawa Cystic Fibrosis Treatment Knowledge and Adherence Program”, from May 2011 to June 2013. Patients were excluded if they had received a lung transplant or had an expected survival of less than one year. Final sample size was 45 adults.

The following was assessed for all participants: lung function (FEV1%), depression (Center for Epidemiological Studies Depression Scale), anxiety (7-item Generalized Anxiety Disorder scale), pain (Cystic Fibrosis Symptom Scale, developed by researchers this for study), BC (Breathlessness Catastrophizing Scale, adapted from the Pain Catastrophizing Scale), and HRQoL (Cystic Fibrosis Quality of Life questionnaire).

After controlling for lung function, depression, anxiety, and pain, there was a significant correlation between breathlessness catastrophizing and poor HRQoL (P <.05). In addition, 40% had clinical depression and 13.3% had moderate levels of anxiety.

While results are preliminary and warrant further exploration, Maras said this highlights the importance of assessing and treating mental health difficulties in individuals with cystic fibrosis.

“For example, breathlessness catastrophizing could be targeted in psychological interventions to improve mental health, quality of life, and/or treatment,” she said. “Findings are also relevant for other populations that experience breathlessness, such as those with asthma and other respiratory diseases, neuromuscular conditions, and cancer.”

Maras said that further research should center on longitudinal designs to examine breathlessness catastrophizing in larger and more diverse populations and explore how it plays a role in treatment uptake and adherence.

The study, “Breathlessness catastrophizing relates to poorer quality of life in adults with cystic fibrosis”, was published in the Journal of Cystic Fibrosis.

Click here for original article.

How One Conversation Led Me to Being More Intentional About My Life

By: Ella Balasa

Would I ever live long enough to fall in love? Would I be able to graduate college? Would I be remembered for making some kind of impact on the world before I was gone? Would I get to travel to destinations where the breaking waves crashed against a rocky shore and the sea mist sprayed as I breathed deeply, and beside me stood …

Gabriella-Balasa-Beach-Featured-Rectangle

I’m startled back to reality. I sit in a hospital bed, surrounded by my parents in chairs on either side of me. I’m on the lumpy foam mattress, where I sit cross legged and my butt sinks at least 4 inches straining my back and adding to the pain the past few weeks — and this conversation — have caused me. My dad sits, lips pursed as normal when he listens intently. We are all listening to my doctor talk about my declining health, about my recent episode of pneumonia, and what my future may hold.

“No one knows the future,” I think, as the doctor speaks. My mind jumps again to that ocean scene, only it isn’t me standing on the shore, I’m now observing the scene from above, as if in spirit. Observing a couple embrace and I feel a strange sense of sadness, anger, and jealousy.

“It’s time to consider a lung transplant.” Those words, uttered from my pediatric CF doctor 6 years ago, made me, in an instant, think about all the joys of life I hadn’t gotten to experience yet.

Why me? That’s the first thought many people have when they can’t accept the reality of what’s happening. We try to answer unanswerable questions.

Later that summer, my parents and I followed doctors’ advice and scheduled a week-long transplant evaluation. A week of what I still consider to be grueling medical tests, even compared to other lung complications I have developed since. In the end, the transplant evaluators concluded I was not quite in the transplant window at the time. That fall, my health started to stabilize. I started my second year of college and I felt myself withdraw from the world.

To continue reading, visit CFF community blog.

Improving Mental Health Within the CF Community

By: Ella Balasa

Having cystic fibrosis makes life sometimes stressful, sometimes lonely, sometimes painful, and oftentimes scary. But it can also make life seem more valuable, brighter, more optimistic, and more fun.

Figuring out how to balance the good and the bad, and come out from tough situations on the positive end can be challenging, especially without support from others. This includes support from family and friends who are physically there for us every day, and support from within the CF community, those who empathize in fighting this disease.

I’ve been very fortunate to have both of these kinds of support. Unfortunately, many who fight CF do it alone, without the support of many family members, friends, or spouses. Many also have yet to connect with the CF community online — either they aren’t on social media platforms or aren’t interested.

According to Cystic Fibrosis Foundation guidelines, CF patients are not to be within 6 feet of each other under any circumstances. They are encouraged to avoid being in the same vicinity at all. This is to prevent cross-infection, the transference of antibiotic-resistant bacteria between patients, which could spread more sickness around the CF population.

While this precaution is in place for our health benefit, it isn’t conducive to real-life friendships among individuals. This can create feelings of isolation, sadness, and the belief that no one understands, and combined with a potential lack of physical support from friends and family, it can be a recipe for serious mental health issues.

Everyone needs physical relationships. We all need someone’s embrace when we’re hurting. In a CF perspective, the hurt can be physical (such as lung pains or fevers) or mental (when we’ve hit a brick wall or the optimism we have that the next day will be better has faded).

To continue reading this article please click here.

CF Roundtable invites you to write for the upcoming issue!

CF Roundtable invites adults with CF to write for our Spring 2018 issue. All submissions are due on March 15th.

The Focus Topic is “Maintaining Mental Health With CF”. Some questions to ponder as you write are:  Does your CF affect your mental state? What do you do to deal with it? Do you have any information to share with our readers on how to deal with depression or other mental conditions that are caused by having CF? Continue reading CF Roundtable invites you to write for the upcoming issue!

Sign up for BreatheCON Sept 8th and 9th!

By Jeanie Hanley MD, President of USACFA and
John Mercer, BreatheCon 2017 Co-Chair

Sign up today for this FREE virtual event for adults with cystic fibrosis.

Our USACFA director, Mark Levine, is a featured Keynote Speaker on Friday and our CF Roundtable columnists, Aimee Continue reading Sign up for BreatheCON Sept 8th and 9th!

These are the health benefits of spending time by the ocean

https://m.mic.com/articles/181359/these-are-the-health-benefits-of-spending-time-by-the-ocean#.UVNSy7ncP

The sea is miraculous. Just the sight of the seemingly boundless body of water is humbling for many. And in the 18th century, the ocean was often regarded as a panacea, with doctors prescribing drinking a pint of sea water to cure Continue reading These are the health benefits of spending time by the ocean

Making it Matter Ep. 31—Julia Recovers From the Stomach Flu

The past few days for Julia have been rough! She was dealing with the stomach flu, but now she’s better (yay!). So in order to get her back on her feet, we decide to launch the first ever Making it Continue reading Making it Matter Ep. 31—Julia Recovers From the Stomach Flu

Making it Matter Ep. 27 – Can Drug Development be a Stress Point?

Drug discovery and development in the cystic fibrosis community is moving at an incredible pace. With that, though, comes a feel of stress or anxiety, as the science behind all of this is both complex and constantly moving through seemingly never ending clinical trials. For Continue reading Making it Matter Ep. 27 – Can Drug Development be a Stress Point?

OWN IT: Do People With Cystic Fibrosis Experience FOMO?

Full disclosure here; I’m writing this while doing my treatments. In fact, I just stuck a syringe into a vial of sterile water, drew some out and then injected it into vial containing powdered medicine. Continue reading OWN IT: Do People With Cystic Fibrosis Experience FOMO?