We have this silly phrase in my family that we use when one of us makes a minor mistake or faux pas. One of us will declare with dramatic force, “You’ve let me down, you’ve let the family down, but worst of all you’ve let yourself down.” I guess we use it to highlight that whatever the mistake was, it really doesn’t matter in the scheme of things! It’s a helpful reminder that relationships are built of far more than upholding commitments and always getting it right. But in my experience, worries about letting others down are part of life with chronic illness.
I’ve been feeling rather unwell for the past few days and had to sack off various events and engagements this weekend. While it was rubbish, I did find the different coping tactics I have learned over the past few years popping into my head a little faster than they used to. I’ve been better at pacing myself, I’ve asked for help and I have tried to remember that what I can achieve isn’t the sum of my value (that one’s still a bit of a struggle).
But one thing I found especially difficult this weekend is the feeling that I have ‘let people down’. On Saturday evening I found myself telling my husband, “I’m worried about getting a reputation; I don’t want to be that person that always cancels.” Hearing myself speak these words, I realised I was making sweeping judgements about myself and the people I love. I wrote recently about not needing to give excuses when I need to change plans, and I believe shedding unnecessary worry about being a let-down frees you up to be more honest about what’s actually going on.
I was supposed to be taking photos at an event on Saturday, but wasn’t well enough to go. I felt so bad cancelling – I’ve realised I struggle to separate what I want to do from what my body is doing. Although I know they are not the same thing, I often feel a sense of responsibility for symptoms that are out of my control, which isn’t always helpful. My desire is to be there, to help out, to enjoy it, but my body just doesn’t play ball sometimes – it’s not me letting anyone down, it’s my unhelpful shell! The reality was that it went fine without me. But even if me missing it had been a big deal, I have to be OK with that too.
I also know it’s a waste of thought-space to worry about my reputation. That’s something else I can’t control. This concern about how people see me often leads me to assume they won’t understand my reasons for resting, which is often not true. On Saturday, my family and friends were nothing but loving and kind towards me. Worrying about being judged discredits people who have shown their support and acceptance time and again. Even when people don’t understand, there’s not a whole lot I can do about it – I just have to let it go.
Worrying about being a let-down can sometimes paralyse you – there are times I haven’t made any firm commitments because that seems preferable to cancelling at the last minute. But when I can overcome those worries and make plans I feel so much better – I have things to look forward to, as long as I can resist putting pressure on myself to ‘be reliable’.
Life is there for the taking if I’m up to it, and if I’m not, we can always reschedule!
The Chronic Parent 