Chronic illness: Kerry Hudson says the best medicine is sensitivity

One that affects my breathing and another that heightens my immune system ensuring that my body is constantly attacking itself. Both mean I have less energy than I should. Sometimes none at all, sometimes a little but never enough for everything.

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So, when I was scrolling through Facebook, you can imagine my face when an old acquaintance put up the following post because she needed a day in bed (paraphrased here to protect the guilty): 'I haven't been ill for years. Perhaps this is because I'm the breadwinner, the mother, the organiser and I simply don't have time to be sick. Perhaps I am just lucky.'

I have been sick, often totally incapacitated, for well over a year now and my head spun as I furiously typed out several replies, ‘Yes, you are lucky to only be ill for one day’…and deleted it.

Next, I typed, ‘Do you know how ableist this statement is?’...and I deleted it.

Finally, I settled on, ‘I'm sorry you're not feeling well, take it from me you should listen to your body. However, the way you have written this makes it sound like people get ill because they lack hustle or virtue. Just so you know, I do all the same things as you with a quarter of the resource simply because I have to.’ Then…I deleted that too. Because the woman in question really is very nice and I knew that she was having a bad day. She hadn’t intended to hurt my feelings, invalidate, or make me feel, as I think chronically ill people so often do, judged and guilty for something vastly beyond my control.

There are other statements I've learned to grin and bear – as though learning to live with a body that doesn't fully work isn’t chore enough. Perhaps one of my least favourite is, ‘Well you look okay.’ I want to reply, ‘I bet I do. I spent an hour of my valuable energy today trying to look normal so that you wouldn't feel embarrassed or pity the state of me. But it seems I’m just giving you a reason to doubt my illness.’

Kerry Hudson (Image: free)

Of course, I don't say this. I laugh and say, ‘Thank you, you can take my health but you’ll never take my Ruby Woo lipstick.’ You get used to simply tolerating these comments and opinions. After all, chronic illness is nothing but determination and endurance.

Except that you're not training for a marathon, competing for a promotion or trying to save for that big holiday next year, your efforts are filling a void with only half the resources needed. Work, relationships, personal hygiene, self-care, medication and its side effects, pain management. Fun, ambitions, self-improvement? They come last.

I have tried explaining this to my very well-intentioned, very clever relative who, though he knows I see some of the best consultants in the Scottish NHS, is adamant that if I drink more water, take cold showers and start exercising, I’ll be cured. In a similar category, is a friend who genuinely believes her massage guru can heal cancer with healing touch.

It’s worth noting that none of these people – not the person who ‘simply doesn’t have time to be ill’, the colleague who eyes my carefully chosen outfit as though it’s a ‘fit to work’ doctor’s note, my relative who’s determined more ginger is the remedy or my masseuse friend who thinks it’s simply ‘bad energy’ – none of these people have ever been chronically ill.

In fact, they are all in rude health, which I guess is why they feel they are experts in the virtues of being in fine fettle. After all, they must have done something right.

I asked on social media what other chronically ill people were sick of hearing and the top answers were people saying, ‘get well soon’ or ‘when are you going to get better?’ or ‘sick again, are you?’ As all the respondents pointed out, the meaning of ‘chronic’ is that it’s reoccurring.

READ MORE: Kerry Hudson: Help! My body is trying to kill me

Coming hot on those insensitive beauties heels, and no surprise to me, was people asking, ‘Have you tried ’.

The truth is that most chronically ill people have tried every single avenue of relief; medicinal, alternative, emotional, mental. It isn't a nice excuse for a rest. It’s not a nasty cold for which we just need some vitamin C, or food poisoning to get out of our system. Chronic illness is our system and as well as dealing with the physical effects we deal with the psychological impact of knowing that this is our long-term reality.

If you’re wondering what is the best thing you can say to someone with chronic illness, it’s very simple. Just say, ‘What can I do to help? What do you need from me?’ As the kids say, ‘It’s not that deep.’ Unless you're a medical doctor or you have personal experience of chronic illness don't try to superimpose your experience over our vastly different one and don’t offer unsolicited advice no matter how well intentioned. Instead, listen, learn, be generous with your time and when you offer help really mean it.