Balancing Mental and Other Health Needs Within CF Community

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.

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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).

Mental health and physical health are so closely connected. When physical health lacks, we feel stressed and hopeless, bringing clouds over otherwise bright skies. When mental health lacks, it deprives us of motivation to keep up with breathing treatments, take medications, and exercise.

Although the CF community is close-knit and the internet is a wonderful tool to help us build relationships, I believe lack of a physical relationship can contribute to feelings of isolation and loneliness among some patients. More focus has been placed lately on improving patients’ mental health, with more clinics providing psychologists and social workers that do mental health screenings and give emotional support. Yet mental health remains an area of concern, and many patients continue to struggle with depression, anxiety, etc.

In light of recent news, mental health has become a topic of serious concern and conversation. With the string of mass shootings in schools, concert venues, and other public places, we’ve attributed the senseless killings to mental health issues among the guilty.

In this age, there is increasing cyberbullying and obsession over comparing the numbers of followers we have on Instagram to others, and intangible relationships rank self-worth. I think the quality of online friendships is diminished in comparison to physical friendships. Although online friendships are important, they cannot replace face-to-face interactions.

Many years ago, there were no restrictions on CF patients’ physical contact with each other. The guidelines we now have were implemented based on scientific evidence of cross-infection between patients that contributed to the spread of antibiotic-resistant bacteria.

I believe these guidelines should be thought about logically and reasonably. Bacteria are spread through saliva and the air when someone coughs. It’s reasonable to think that when a person coughs, spit can fly 6 feet away. But not everyone with CF coughs all the time — some only do during a lung exacerbation. Some with CF don’t even cough at all.

Instead of implementing universal guidelines, perhaps consideration could be given to individual patients based on their current medical conditions, comfort level in social interactions, and the nature of the situation. Extra support could be very beneficial in some situations, based on a patient’s mental health stability and level of support received.

It’s valid to argue that there will always be mental health issues when it comes to treatment of patients with chronic illnesses, whether they can interact with one another or not. It’s also true that CF centers and the CF Foundation are working hard to create a supportive, welcoming, and inclusive CF community online.

I personally am cautious about having in-person contact with other patients. However, depending on the situation, I do find personal connections within the CF community are important enough for me to not avoid other patients as a hard rule. In closing, I think a balance between health safety and mental health wellness created by the ability to foster personal connections is important, but I leave the conversation open for thought.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.