Having CF can impact on the health of your social life. Living with any chronic condition will impact your availability and energy at some point. As a result, this may impact your social wellbeing. According to Psychology Today (2020), social wellbeing is the ability to communicate, develop meaningful relationships with others, and maintain a support network that helps overcome loneliness.
CF and friendships
Friendships help us handle stress, make decisions, improve lifestyle choices, keep us mentally strong, are enjoyable, fun and supportive and help us rebound from negative life or health issues more quickly. However, having a chronic illness can occasionally impact on the quality of our friendships.
Realistically there will be time spent alone doing admissions, physio, or nebs, where you may feel disconnected or misunderstood. This might also be when you need support the most. During these times it’s common to look at social media and feel average. You may feel left out, jealous of your friends’ health, and the fun they are having. Or you may just feel like you genuinely can’t keep up. You may also feel like friends really don’t understand what it’s like living with a chronic illness.
Sometimes, friends may be aware that you’re unwell or struggling to keep up and want to help, but don’t know how to. One recommended strategy for being open with friends about how you feel or what you need, is to say “I need to vent…..”, “I need your support…” or “I need advice…..”. By being clear and using this language, your feelings are made clear for everyone (Psychology Today, 2020).
”"CF can be a negative aspect with friends because they don't truly understand -- they don't see what happens on a day to day basis - just the fallout. You've had to cancel. You're in hospital AGAIN. I find there is a genuine lack of understanding that when I post stuff on Facebook, this is just my ordinary life. Some panic and think I'm unwell, others probably think I'm attention-seeking (rather than the true intent of raising awareness).”Adult with CF
Explaining how CF makes you feel
A challenge of having CF, can be trying to explain to friends how demanding CF is on time, on physical and emotional energy, and how rotten it can make you feel sometimes.
“The Spoon Theory”, a story by Christine Miserandino, is popular among many people dealing with chronic illness, because it describes the idea of limited energy, using “spoons” as a unit of energy. Christine wrote this story after trying to explain to her friends what it was like living with a chronic illness. There was an assumption that because she didn’t look sick, she wasn’t. It is a great article explaining the challenges of hidden disabilities.
Due to the relevance of Christine’s story to so many, The Spoon Theory has generated a global social network of people called ‘Spoonies’, who all suffer from invisible chronic illnesses, and connect via social media, blogs, podcasts and articles.
Often when we feel disconnected or lonely we turn to social media. Social media has many positive benefits including building stronger relationships both socially and professionally, inspiring us creatively, and making us feel part of a global community. Social media can also be a useful motivator for people to organise events or get togethers, get healthier or make that career move. And everything on it looks amazing! But that’s not always the case.
When you feel left out.
In 2015, the Australian Psychological Society (APS), found Australians, teens and 18-35 year olds in particular, suffer greatly from FOMO (the Fear of Missing Out). FOMO is basically a modern day version of ‘keeping up with the Jones’ and is a negative internal response largely due to heavy social media use.
FOMO includes feeling like friends are having more rewarding experiences than you, that colleagues are more successful, that physical perfection is more important than anything else, or feeling left out or excluded on planned get together. The negative impacts can be concerning, impacting sleep, self-worth and the ability to relax. If you do feel like you are missing out, try the below.
Moderate your use of social media
Learn to live your own life
Realise you might not actually be missing out
Slow down, you don’t have to do and go to everything
Practice discernment: what is truly important to you?
Appreciate the grass isn’t always greener
Practice gratitude: instead of chasing fantasies, try to appreciate what you have.
The JOMO (the Joy Of Missing Out) is the antidote to FOMO. JOMO is essentially about being present and content with where you are at in life. JOMO allows you to live in the slow lane, enjoy solitude and exclusion when you feel you need it, where you can say no and focus more on you, and your goals without comparison. This might seem hard if you’re having an admission or feel unwell and want to go out, but pleasure can be found in the smaller moments too. Try switching thought habits and consider the below.
Focus on your important relationships, conversation, hobbies, and interests
Make time a priority. Don’t waste it comparing or worrying about what others are doing
Experience real life: scrolling is often wasted time. Do an activity you enjoy
Say ‘no’ if things are too much. Use self-care and self-love
Connect with nature. Being in the ocean, going for a walk, or riding a bike alone can be just as enjoyable as a social catch-up
Start a conversation with a stranger. Often we can learn so much from others we don’t know.
Connect with and read about others with CF
The CF Hub is an Australian run, members only, online community for people 16 years and over who live with CF. They have an active community on Facebook, Instagram and extensive resources and discussion on living with CF.
Salty Girls is a Canadian publication . Salty Girls portrays women diagnosed with cystic fibrosis in all their beauty, however much it differs from society’s standards. It is a great resource for those living with CF, and for sharing the challenges of this illness with those who don’t have it.
Psychology.org.au. 2020. Teens Suffer Highest Rates Of FOMO | APS. [online] Available at: <https://www.psychology.org.au/news/media_releases/8Nov2015-fomo/> [Accessed 2 December 2020].
Psychologytoday.com. 2020. Are ‘I’ statements, better than ‘You’ statements. [online] Available at: <https://www.psychologytoday.com/us/blog/cui-bono/201211/are-i-statements-better-you-statements>