As you know this blog is usually a pretty positive place; I love to share pictures of recipes I’m making, veggies I’m juicing and all the other bits and pieces that make up living a balanced lifestyle! Usually, I get lots of lovely comments but occasionally I’ll see sarcastic ones, which all seem to follow the same vain: If you can eat this/do that/feel like this then your illness must not be as serious as mine.
I shouldn’t be surprised: competition between those who are unwell is not a new thing. I see this all over the web. From my little space on the net, to social media, to the facebook groups I’m a part of. As I mentioned in my article on Sam Faiers and other celebs last week, when we hear about someone else’s experiences we’re quick to compare it to ourselves; in an attempt to make it our own experience too. While Sam experienced a backlash for her naivety when sharing her ‘cure’ of IBD, many others receive nasty comments for sharing a success story of their own illnesses. Of course, these success stories might not always be scientific in nature (I’m cured after taking Aloe Vera!) and can be frustrating when it seems the writer hasn’t grasped the severity of the illness. Yet essentially they all feature people celebrating the utter relief of feeling well.
In response to these kinds of stories, I’ve seen replies such as ‘it won’t last’ ‘just wait another ten years’ and ‘you obviously didn’t have the illness to begin with!’ It is clear these responses don’t often intend to be malicious but stem from perhaps lived experience. How many of us have had that feeling of excitement when being told their well for it all come crashing down a few weeks later (I blogged about the very same thing in my open letter to Crohn’s in December)? Therefore, we can’t help but feel we know better.; we’ve been there, done that! Yet is projecting our own experiences on to others really the answer.
What about the competition for who has the ‘most severe illness?’ How many times have you seen people compete online over who is feeling worse that day? When people lament over feeling poorly, users are quick to comment. That sounds like a good day for me… If it’s a food post, people reply ‘your illness must be much milder than mine if you can eat that! ‘ How can we possibly get an accurate picture of someone’s health from an internet snap? But more importantly, we don’t need to. Instead internet sites should focus on support and encouragement not comparison and competition.
Another area of competition revolves a highly controversial topic in the spoonie community: being able to work. This is where experiences vary so widely: many are lucky to work full time while others are forced to claim disability living allowance due their debilitating illness. Yet this is not simply due to a disease being mild or severe. Many things can effect this such as mental health, confidence and being able to manage symptoms while working. While I feel really lucky to be able to work full time and blog, I would never assume those that do are simply only experiencing ‘mild’ symptoms. Similarly, those with ‘mild’ symptoms (and I use this term loosely to demonstrate the arbitrary nature of defining illness on such a sliding scale) shouldn’t be assumed they can rush back to work- the psychological impact of many chronic illnesses alone can be life-altering.
This links to the final hotly debated topic: disability. I often see many petitions circulating the net to recognize illnesses (including IBD) as a disability. This is something I don’t agree with as I think lots of it comes down to personal perception and whether you feel the disease you have impacts your day to day life significantly. For me, I don’t see myself as disabled but this doesn’t mean others don’t. But again this doesn’t make my experiences ‘better’ or ‘worse’ than anyone else; it’s just my perception.
As I mentioned in my last blog rant; our own journeys are the ones that are the most important. It doesn’t do us any good in being with competition with each other when the real battle we should be focusing on is only thing that really matters: the fight for good health.