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Never Read The Comments

I recently wrote a piece on some of the more common misconceptions I have encountered in living with chronic illness. You can read it here if you’d like and are a total legend: 8 (Wrong) Things People Often Say About My Chronic Illness – and the Truth  

Not to toot my own horn, but I received lots of lovely feedback after this was published. Mainly from people who can relate to my experiences and/or have also encountered similarly frustrating attitudes towards their illness/condition.  However, as with every nice comment, there is always an accompanying slew of negative ones. I have learned to accept these mostly with grace and humility, because some can (and have been) constructive. Some just flat out insult my nose or various other physical features mind you, which are somewhat less constructive. 

But, despite however much I try to stick to my golden rule of NEVER READING THE COMMENTS, I came across a comment on that piece which upset me a little. Not because it was directed at something I’d worked hard on, or even mentioned my nose surprisingly enough, but because it reminded me of an attitude I encounter all too regularly in living with an incurable condition. 

Without typing it verbatim, the main gist of this comment was “you can either try to educate or just drop it and walk away”. This was in relation to an article focusing on my having pinpointed some of the more frustrating attitudes to chronic illness. My main gripe with this comment isn’t in its negativity; something we are all guilty of in living with a chronic condition every now and then. But more in the bitterness and depressing resignation I feel it displays.

I’m fully aware that, illness or not, with some people in our lives we eventually have to accept that we will never see eye to eye and have to gradually shed them from our circle for the sake of protecting our own hearts (and maintaining our sanity). I’m not naïve enough to think that everyone can be persuaded into our way of thinking either. In reality I’m personally one of the most cynical people I know.

But I do think most of us are essentially good.

Most of us want to help those around us when we can and make the lives of those we care for a little better. That’s why the idea that if someone just doesn’t ‘get it’ we should walk away niggles at me. Should we really give up that quickly and resign ourselves to a life of solitude? When I first found out I was ill – I didn’t ‘get it’ either, and I had it.  No one around me ‘got it’. We all had to be educated. Some took longer than others to adapt and learn to understand; one of those slow-learners was me.

One of the main joys in life is feeling understood. For everyone of course, but I’d wager in particular if you live with a condition which is unknown and commonly misunderstood. A common phrase used in chronic illness circles is ‘you don’t get it until you get it’ – which I ‘get’. It’s essentially impossible to understand someone’s pain and continued suffering unless you live with it yourself. But that doesn’t mean those without the same symptoms and issues can’t attempt to understand and at the very least empathise with us. 

Since my own diagnosis I’ve encountered every possible reaction to an admission of my illness. Distain, Disappointment, Disgust, Pity, Sadness, Discomfort. Many of these have been incredibly upsetting; I didn’t choose this life after all. It was sprung upon me and seemingly in an instant I was irrevocably changed to those around me. I became the sick friend, the sick colleague, the sick sister. I had to learn about my condition to help educate the people who love me. That education pollinates and spreads throughout families, mutual friends, workmates; until slowly people begin to grasp what we are going through.

Human connection can be one of the most happiness inducing experiences we can have. To be able to educate someone in an incredibly personal and vulnerable part of our lives can reap incredible benefits. It decreases our anxiety, helps us to build a support network we can rely on, allows us to talk openly without fear of judgement.

I’ve personally lost friends since I got sick. That in itself was difficult and heart-wrenching but has ultimately allowed me to focus on those who really want to ‘get it’. Those around me who don’t know how I feel, accept that they can’t, but they empathise and listen while I share. They don’t judge when I don’t show up, or let them down at the last minute. They listen with patience when I gripe and moan. I don’t assume I should be met with any special treatment because I have an illness. I hope, like everyone, to be met with a little kindness when I relay a daily struggle. I hope not to be judged or have presumptions made on how I should behave; just as I wouldn’t in return. Trying to educate those around us in our experiences and how difficult life with chronic illness can be is important, because even if we can’t help everyone ‘get it’, we can help hone our own skills in explaining the complexities of our condition, and maybe even make the whole conversation easier for the next person jumping on the sickly train behind us.

Kathleen NichollsComment