Yesterday the Sunday Star Times picked up on a subject I’ve been banging on about for ages – the old “You don’t look sick” comment.
Shabnam Dastgheib spoke with five people with different, often invisible, chronic illnesses. Their experiences were all familiar to me.
For those with a chronic illness, managing medication, exercise, diet and health outcomes is often combined with managing other people’s expectations and well-intentioned suggestions.
A titbit of misguided advice or a cheerful, “things aren’t all bad” can be infuriating for those who may be at their lowest. Those who suffer from chronic illness say people trying their hardest to say the right thing can often end up making hurtful comments, making life more complicated and, in general, frustrating an already frustrated situation.
So what is hurtful? What shouldn’t be said and why can it be so insulting?
One thing that struck me about all these different illnesses was the inconsistency in symptoms, both visible and invisible.
This is something that frustrates me constantly. I don’t know how I’m going to feel from one day to the next. One morning I can get up and feel ok, I can do a couple hours of writing, I can go for a walk, make food, engage in conversations, not have to take any painkillers.
The next day I might wake up in agony, have to stay laying down most of the day, and not be able to string a clear sentence together.
There is no way for me to predict this. That’s one of the things that’s making it so difficult for me to go back to work. How can I commit to doing a job when I don’t know if I’ll be able to get out of bed from one day to the next? I pride myself on being very reliable and delivering quality work. I can’t do either of those things right now because my illness won’t let me.
It also makes it difficult for other people. They might see me on a good day and think I’m doing really well. They might wonder why I don’t go to work. Obviously, they don’t usually see me on bad days because I’m not exactly sociable then. In fact, I hide myself because I’m vulnerable and, to be honest, I’m ashamed. I’m ashamed of how weak my illness makes me.
On top of that, I’ll lie. I’ll lie when people ask how I’m doing, because I find it difficult to explain how much my life and my head have been utterly destroyed by being ill. I’ll saying I’m doing fine, because how do I explain agony that has no cause, weakness, depression, the ups-and-downs, the extreme fatigue that just goes and on with no relief? Especially when, to them, I might look fine.
I guess I just wanted to reinforce the point in the article. You don’t know what’s going on for anyone else – ‘invisible’ illness or not. You maybe can’t even trust what they tell you, because they might be like me and downplay their symptoms, for any number of reasons. Like Andrew Johnson says in that article – a little kindness goes a long way.