author / blogger


Some Kind of Wonderful

When I am physically and mentally 'well' enough, I feel that I have a self-imposed responsibility of sorts to use my ‘voice’ for my chronically ill comrades stuck in bed, unable to defend themselves. Those lacking in energy to fight back against misunderstanding and mockery of their conditions.

I know that the vulnerability and often intense loneliness that comes with invisible illness can be overwhelming. Therefore hearing, and seeing people on the outside of our sick bed ridicule our illness or make assumptions on how we should and shouldn’t behave can be a sickening pill to swallow, and believe me we have enough of them to deal with already.

It’s natural that in life we won’t be understood by everyone we encounter, but it’s difficult to accept that unkindness could be utilised and even amplified against those of us suffering life-altering illnesses. There is a common phrase bandied often around by those with chronic illness; ‘You don’t get it, until you get it’. This basically means those without a chronic condition can’t understand what we are going through unless they have experience of it themselves. Not much we can do about that. I for one don’t have the skills or expertise to develop a formula to inject my illness into the veins of others and if I did you are god damn right I’d be patenting that quicker than you can say ‘THAT SOUNDS UNETHICAL’.

Despite my tedious attempts at making light of causing widespread illness amongst 100% of the world’s population, I’d actually prefer if we didn’t go down that route and instead just practiced tolerance and basic understanding, on both sides of the sickly fence. Besides I do not have the financial backing to put an essentially life threatening and undoubtedly illegal plan into action.

So, nonsense aside, what’s my problem? Well as I told my therapist, you DO NOT have enough hours in the day for that answer! Then we both laughed heartily because I am CERTAIN she had never heard that particular gem before! But back to that problem.

I find it unbearable when I am in the midst of a particularly awful bout of illness, to feel alone. Of course, I generally want to be physically alone; because no one needs to see me coated in sweat, writhing in pain and smelling like the corpse bride. It’s exhausting enough coping with crippling symptoms, without having to deal with entertaining someone else. Or at the very least staying semi-conscious in their presence. So, add onto that the idea that we have to encounter other people who then doubt our illness, berate us for what we can’t do, push us to ‘get better’ or simply imply we are overreacting, and the feelings of isolation are compounded.

Patients need and want to feel included in our friends and families lives. We don’t want to feel like outsiders, as internally we already feel that way more than you might think. We want to be included in ‘life’ not just when are well enough to ‘live’ it. Its so easy to just choose kindness over bitterness, annoyance, and irritation. So much of patient’s lives are felt feeling an immense amount of guilt and our inability not to give enough, in work, at home, in friendship, in love. When we are misunderstood or mocked it only serves to push us further into feelings of separation and exclusion.

We just want to live as normal lives as we possibly can despite our conditions. Just treat those with chronic illness the way you’d hope to be treated were you to fall ill; with a little empathy and not a hint of doubt. What’s the alternative? Me injecting you with a syringe filled with disease? Please don’t make me take out a bank loan and stockpile syringes. Again.

Kathleen NichollsComment