Connecting With Others With CF: Benefits and Warnings (Part 2)
Over the last few decades, digital technologies and social media have changed the way many people experience and cope with chronic illness.1 Personally, it’s shaped the means at which I built my support system living with cystic fibrosis. In the first part of this series, various social media platforms and programs were discussed as a way for people with CF and their families to connect and peer support. Next, we will dive into the research surrounding the benefits of social media usage in chronic illness, as well as the warning signs to consider disconnecting from your screen.
Benefits of connecting with CF
It is widely reported that using social media platforms to connect with others has a positive effect on mental health of those living with various chronic illnesses.1,2 In the CF community, social media serves as the least risky venue of communication due to infection control, so it makes sense that most of our community would be based in digital technologies. There are robust CF groups on almost every social media platform possible. In one study, 94.3% of CF adolescents were looking for friends with the same disease on Facebook.3 Why is connecting to others with CF so important to us?
According to research, participation in chronic illness social media groups is beneficial to participants with chronic illness.1-5 The benefits varied by specific platform, usage, and disease. The benefits of social media connection among disease-specific groups included:2
- Social support
- Ownership of identity with disease
- Access to information about disease management
- Adherence to medical treatment
- Ability to share personal experiences
- Flexibility to be social despite health status
Everyone desires to belong and be understood exactly where they are in life. Often when living with CF, it’s hard to feel fully understood by people who do not have CF. Infection control creates a barrier to physical friendships in the CF community. However, that is why I am thankful for the friendships and CF groups over the internet to turn to when I need CF advice or encouragement.
When to reduce screen time
Fostering friendships over the internet with people that share the same disease isn’t always easy. As much as it is encouraging, it can be overwhelming to be saturated with so much information about a disease you already live with day-to-day. Moreover, sometimes following along with others’ health journeys can be emotionally taxing on your own mental health. In fact, sometimes you have to know when it’s time to disconnect to protect your own mental health.
Who is the sickest? The “comparison game” is when the conversation is focused around who has the lowest PFTs, worst symptoms, or takes the most medicine, etc.--essentially who is struggling the most. It’s a weird phenomenon but happens a lot on social media in the CF community for some reason.
I think it goes back to that desire of being understood and receiving empathy for the disease we live with daily. Often, the comparison game isn’t healthy or uplifting and should be avoided if possible. If you notice it, it might be time to put down your phone and practice some encouraging self-care instead.
Will that happen to me?
One of the downsides to forming friendships with people with CF is when they get sick or are struggling. It is difficult to watch your friends suffer because you care for them. Also, there are times where that might spike your increase your own anxiety or guilt about your health. When will I get sick like that? Is it only a matter of time? Why them and not me? It is difficult to stop that train of thought sometimes.
During moments of personal heightened anxiety, it might be best to limit your social media involvement and take care of your mental health by focusing on other activities. Don’t ignore your friends, instead limit the overall saturation of CF social media usage. Think of it like a funnel--only the most important communication can flow through.
How do you connect with others with CF?
Connecting with others with CF is vital to our emotional and mental well-being, but also risky at times. How do you balance the benefits vs. risks of social media usage? Share in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?