Since launching this website I have become more involved with some Cystic Fibrosis online community’s. These online sources have had both an encouraging and discouraging impression on my well-being. Lately, I have come across some online forums that have made me negatively question certain things that have similarly happened to me as well as others. I know that the information that we share with each other is both powerful in positive and negative ways. But, how we interpret what we read can ultimately influence the way in which we construe the condition.
For 24 years my parent’s did not have contact with social media groups or search engines to dictate how they raised me. I mean a good friend of mine has CF and our mothers were good friends in hospital. I’m sure they shared insights on what was working for them but that’s all it ever was, not a constant bombardment of information and anecdotes from each other. These days I feel like when I click online I am dancing on a double-edged sword. What I am scrolling past and being exposed to is sometimes shocking and disheartening.
I’m not saying that these outlets are irrelevant because people do ask good questions and share great stories that can help different people in certain situations. But I suppose I am writing this blog as a caution to not get caught up in the ill-fated propaganda of Cystic Fibrosis.
Let Me Explain:
I noticed the picture above in a post on social media recently, a strong and meaningful image for people that do not have CF. For my whole life I believed having the average fev1 (lung function) of over 100% meant I was healthier than the average person which was something I was proud of. This image of lung comparisons was telling me otherwise!
Initially I was astonished at this portrayal, in denial that 130% was average, like you can’t get 130%… it’s not how mathematics works. For a fleeting moment I could have cried, was my whole life a lie ha-ha? Dramatic I know, but f*** this image made me feel belittled, disheartened and not good enough. I explained it to my work partner at the time and he just stared at me fully empathising at my explanation of my feelings, he said “dude you do triathlons, average people couldn’t finish one leg of one of your races.”
He had a point, so I ate some cookies and moved on with my life.
Another example of being caught up in the ‘propaganda’ comes from early this morning. Scrolling through my feed I came across a question from a fellow sufferer that went along the lines of “Has anyone felt depression or self-worthlessness while taking Orkambi?” My first response was “don’t read this, scroll past it”, however as per usual my curiosity got the better of me. Fifteen minutes later I had diagnosed myself with anxiety and depression, my self-worth had dropped to an all time low. Again, dramatic I know, trust me I’m laughing at myself while I’m dealing with these emotions, like laughing out loud!
Crazy but it’s true, it is not difficult to start questioning this wonder drug that everyone is praying for on the medical scheme (which it should be), when one person is feeling a side effect and reaching out for an opinion.
Nevertheless, today I made a decision to hide all notifications from the pages that I follow and that conveys the message of this blog. I feel that continually exposing myself to this content is affecting my mental stability on a minimalist level. I feel as though more of the content I read the more I have wrong with me, which is totally untrue and I don’t believe it for a second but I am just justifying my opinion within this post.
On the other hand, I take my hat off to the people who have the courage to utilize groups to their health advantage by asking questions like this. Because I am positive that along the lines this has saved a lot of people from serious issues and taught us all a valuable lesson by discussing the condition.
If I ever had a question or wanted to express a theory by all means I would have a look and share my thoughts and opinions with other sufferers. This is how online groups can benefit the CF community. As people feel that they are able to express their opinions and open-up about the condition. Hence why I initially created this website to portray Cystic Fibrosis in another light.
I don’t expect you, to leave every group and switch off communication to the world, but I ask of you to consider the content you expose yourself to and the way that you interpret the information that you read.
I am not trying to be an oracle, but I always look for lightness within the dark (cliché).