I’ve suffered from a variety of chronic illnesses for quite some years now. Most specifically Crohn’s Disease and Arthritis. These conditions can be incredibly debilitating and affect every aspect of my life. I also experience extensive nerve-damage, regular migraines and a whole host of other, less obtrusive health woes. I’m a walking wealth of medical knowledge thanks to these problems and my handbag rattles more than a crèche full of babies with… rattles. Yeah not my finest work but I’m tired. Oh, yes did I mention the extreme fatigue?
As it’s incredibly wearing being poorly 24/7, it’s an unnecessary irritation when we are somehow perceived in certain ways due to our conditions. We can become patients rather than just people. For people on the outside, nothing has changed, but to us it can feel as though we have been altered beyond comprehension.
So in that vein, here are a few myths about people (like me) with chronic illness, which I’d like to debunk. I’m like those ‘Myth Busters’ but morphed into one handy female package; with less facial hair/male genitalia.
1. We don’t actually enjoy being ill: Strange as it may seem, illness and all that goes with it is no fun. If we could choose to live healthy normal lives, I can guarantee you that we would. As I learnt from being the lanky girl with no breasts and a penchant for Star Trek at high school; being the odd one out is no barrel of laughs.
2. Taking time off from work is a stress not a skive: Missing work is often a necessity due to unruly symptoms/hospitalization, and is a major worry when we are forced to lose our income due to issues out with our control. Many chronic conditions are also exacerbated by stress, meaning that putting ourselves in situations where stress breeds, is genuinely dangerous.
3. We are not exaggerating when describing our symptoms: In fact we are probably minimising. That’s not big or clever by the way, but often our tolerances are different to non-poorly people. For example I’ve had a cold for around 158612574651254 years now and it’s just an annoyance, but for a ‘normal’ person that may be a reason to miss work and mainline Lemsip long into the night.
4. We don’t want special treatment: You may see us ‘get’ ‘things’ such as additional breaks at work, or disabled badges, a free flu jab, or even just a great deal on loo roll. We don’t ask for any of these things (well sometimes we do because we have too). There is no need to be envious of this – we don’t actually enjoy missing a few minutes work because we are cradling a public toilet or resting a flushing face on a cold floor tile. If I were looking to get a freebie thanks to my illness it’d be chocolate flavoured bowel prep! Amirite?! No, probably not.
5. Its frustrating having to justify something you don’t have any control over: This is a common aside in living with chronic illness, particularly with the people who either pay your wages or are responsible for your treatment. With employers it can be intimidating having to explain your actions, when really you often don’t understand them yourself. This was a major difficulty for me prior to diagnosis when I was desperately ill and almost lost my job several times. We understand it is vital that the people we work for have all the facts so they can decide how best to help us thrive at work, but often that crosses a line into accusation which can set our confidence back majorly.
6. We just want a little understanding: We don’t want to be singled out due to our conditions, and we don’t want to be looked at with pity or distain. If you don’t understand what we are going through then just ask, on the whole we are happy to talk about it. The more we do the more people will grasp a difficult and complex disease. You don’t have to read a medical journal cover to cover, just be there to listen every now and then. And bring Nutella. And kittens. Other than that, just you.