Often in living with chronic illness I feel like I’m leading a double life. Not in the sexy spy-from-the-films-type-of-way, but in the sense that most of my days are spent pretending I’m not feeling 100% ready to be fitted for my coffin. I also spend much of my days dramatizing situations for the sake of writing, but that just an occupational hazard I’m afraid and nothing to do with that previous sentence.
I regular write about live with several illnesses because I like to try and spread awareness and help other patients feel understood and less alone. However, I don't like writing negatively all the time about my conditions, because they have opened me up to many new experiences, calcified stronger relationships and given me a greater sense of understanding about my own body. But as with most things trying to slowly kill you, the bad points do tend to outweigh the good. It's a bit like finding out you've been living next door to a serial killer and saying, "But at least he always took our bin out...". Try as you might the negatives always drown out the good.
So back to my double life.
I get up, walk the dog, cycle to work, hold down a job for around 9hrs a day, come home, housework, dinner, TV, bed. Start the whole cycle of drudgery over again tomorrow! Nothing unusual here you may think; we all do it - get over yourself! OK, rude. Also, I forgot to mention the part where I do all of that in near constant pain and discomfort, in continuous anxiety about my possible need to rush to the bathroom, or worse to be admitted to the hospital.
I do it all in an often debilitating mental-fog, where I’ll struggle to remember words, lose my thread in conversation, even struggle to see clearly through extreme exhaustion.
I don't say any of this for sympathy or some sort of award. Although if you did have a couple of toilet rolls, some old Quality Street wrappers and some PVA glue you could probably make me a makeshift award if you weren't so bloody selfish.
I’ve found it’s often uncomfortable for some people when we as patients are open and honest about our illness. They’ll either try to relate in some way ("My Great Grandad twice removed had a broken toenail once so I know exactly what you're going through") or tell you what you should be doing to get yourself on the road to Cure-sville, ("Mainline Aloe Vera" etc). Patients will often feel we can’t be honest about our ailments because of this. It might seem minor in the grand scheme of sick things, but when it’s everyday it’s pretty infuriating.
As patients, when engaging with others we will often feel like we should have an ‘excuse’ for our relentless exhaustion. We stayed up too late watching TV, couldn’t sleep for a car alarm outside, rampant group sex, etc. At least that way we can take the blame for our fatigue and subsequently have our wrists proverbially slapped before continuing with our day harbouring a deep yet unspoken sense of resentment for our colleagues. You know, the healthy way.
It just doesn't ring true for some to say you’re shattered 1st thing in the morning after a 10 hour sleep, because if you don't have a chronic illness you haven't had the pleasure of that experience. I'm so grateful if you haven't by the way, if you are reading this and are as healthy as a family of granola bars wrapped in lettuce then I’m genuinely happy for you. It just means you might need to stretch your imagination a bit further when we tell you we want to be knocked unconscious upon opening our eyes in the morning.
The easiest thing to do is simply take us at our word. Just trust that we know and understand our own bodies and might not welcome doubt and judgement when we express how we feel. Our double lives mean that we look 'fine' but feel anything but, so just imagine for a moment we are actually telling the truth about our symptoms and act accordingly. We don’t expect anyone to know the ‘magic words’ to say, because there aren’t any. We don’t expect anyone to have all the answers to our gripes because there aren’t any. We don’t expect anything from anyone but a little understanding.