A conversation about cystic fibrosis and mental health

Pat MacDiarmid, Jana Kocourek, Trina Atchison and Marjorie Jorgenson smiling in screenshots during the mental health and cystic fibrosis zoom webinar.

DECEMBER 20, 2022

Mental health and wellness are an essential component to overall health for people living with chronic illnesses like CF, but it’s also important for their parents, caregivers and siblings.

The International Depression Epidemiological Study (TIDES), which provided global data on the level of anxiety and depression in people living with CF and parental caregivers found the prevalence of anxiety and depression is two to three times higher in people living with CF and their caregivers than that of the general population. Pat MacDiarmid, a social worker at the CF clinic at St. Paul’s Hospital in Vancouver, explains that “most clinics that have done screenings in the US and in Canada have found their scores are actually higher than what the TIDES study showed.”

While many clinics introduced mental health screening years ago, not all clinics have additional resources for patients such as a psychiatrist or psychologist. Yet, each team will work together to support your mental health no matter what resources they have. If you have someone you feel comfortable and safe enough to reach out to, it’s important to start the conversation.

For Trina Atchison, an adult who lives with cystic fibrosis, reaching out to the CF community sparked one of the biggest changes in her life. “Not having anyone I could talk to about my disease progression and all the medical treatments I was experiencing made it really hard and lonely.” Trina grew up struggling with her mental health. As a child, she would hide behind a big smile and positive attitude. No matter how hard her family tried to make her feel as normal as possible, she spent most of her time in the hospital with infections, unlike her classmates. In her teens, she hid her cystic fibrosis and coped with her undiagnosed anxiety and depression by partying with her friends to try to appease her craving to be normal. It wasn’t until her early 30s that she reached out to her CF peers and started to prioritize her mental health.

“It was incredible to get on Facebook messenger and talk to people who have already had the treatments I am going through. I encourage you, if you’re someone with CF, to find a community and talk to people who know what you’re going through.”

Trina Atchison

It can also be hard for a parent of a child with CF to prioritize their own needs. Trina’s mother, Marjorie, explains that she pushed herself to the back of the line while taking care of her daughter’s needs and only now at the age of 67 is acknowledging her mental health and wellness.

“As a parent, you feel helpless because you want the best for your child. You want them to be happy and have friends, but you realize you can’t fix it for them. That sense of hopelessness plays into the anxiety and depression.”

Marjorie Jorgenson

Marjorie and Trina both  prioritize their mental health by setting aside time in their schedule to speak to a professional and taking more time to do things that bring them joy.

Watch our webinar, Ask the Experts: Mental Health and Cystic Fibrosis below.

Available resources

If you don’t have extended benefits, you can reach out to your clinic team and ask about resources and options for access counselling you may be eligible for.

Thank you to everyone who attended the Ask the Experts: Mental Health and CF webinar on December 6, 2022. A special thank you to our experts, Pat MacDiarmid from the adult CF clinic at St. Paul’s Hospital, Trina Atchison, adult living with CF, and Marjorie Jorgensen, parent/caregiver. We look forward to continuing the conversation about mental health and learning more from our community about your needs

Thank you to our generous sponsors, The Paul Barber Foundation and The Resource Foundation, for sponsoring this resource.