NOBODY wants to be the ‘flaky friend’ who pulls out of plans. For anyone living with chronic health issues however, having to say no or cancel last minute is sometimes unavoidable.
A flare-up or fatigue can come along, or you might simply need time out to recharge. But it can cause a lot of anxiety – especially if you’re still coming to terms with health changes.
Why does it feel like such tricky emotional territory though, and how can we make it easier?
:: There’s lots going on
As Dr Meg Arroll, chartered psychologist on behalf of Healthspan (healthspan.co.uk/), explains, chronic illness isn’t just about physical symptoms – it impacts psychologically and socially too.
“There’s a concept called ‘illness intrusiveness’, which is pretty much what it says on the tin; how much an illness intrudes on your life,” Arroll says, noting that all three elements feed into each other. So, what’s going on psychologically and socially can have a big influence on our overall experience of health issues. While we can’t flip a switch, being more aware of where feelings are coming from can help reduce their hold on us.
“The big one when you cancel a plan is feeling guilt, and it really reinforces that you are unwell,” says Rachel Brown, who began her career as a pharmacist before launching The Hand of Nature (thehandofnature.co.uk) to support women living with chronic illness through holistic therapy, following her own journey with a long-term condition.
“You can feel torn between wanting to go, but really not having the capacity. And another big one that people don’t often think about, is the grief for the person you were. [You might be thinking], ‘I used to be very active and now I get tired all the time’, for example.”
This sense of grief shouldn’t be overlooked, as it highlights why emotions can be heightened when you’re dealing with an identity shift, such as significant health changes. In reality, everyone has days when they’re exhausted, not feeling well or just not up to it and needs some time out – but when it’s wrapped up in the bigger, more complex picture of chronic illness, it might suddenly feel like a bigger deal.
:: Acceptance is a journey
Coming to terms with health changes can take time and it’s normal for it to feel up and down. But Brown is confident those mindset shifts can happen, and suggests approaching it through habit-building can really help.
“Self-care is so important and as the saying goes, it’s a necessity, not a luxury,” says Brown, who is a big fan of holistic therapies – such as reiki and reflexology – to support your body and mind alongside any medical interventions or medication you may need. “Journaling is a fantastic way to manage your emotions, and brain-dumping [writing down whatever flows through your mind without stopping to think], as then you can really work out your priorities and what has to give.”
:: Fear of letting people down
The dread of disappointing people, or not being as constantly available as we think we should be, is a legitimate worry for many people too. Arroll says we’re often our own worst critics though, and it’s a good idea to reflect on whether this judgement is really just coming from ourselves.
“The shame we put on ourselves can be a huge problem for people with long-term conditions. Often people give themselves a very, very hard time about this, and in terms of the stigma, they’re imagining what other people might think,” she says. “This kind of mind-reading is, what we call in psychology, a form of cognitive distortion, because you can’t read someone else’s mind.”
But you can “change your own scripts”, Arroll adds, “and by changing those scripts we’re often able to overcome that sense of self-stigma.”
A negative script might be: ‘I’m letting everyone down’, ‘They probably think I’m unreliable and selfish’. Instead, focus on nurturing and positive scripts: ‘I’m choosing to take it easy this week so I don’t burn out’, ‘If I get enough rest I know I’ll be more fully present with my friends when I see them.’
Ignoring our own needs, so we can prioritise other people’s, will often backfire too, and we’re probably not really being as helpful as we’re telling ourselves we are. Picture the colleague who comes into the office even when they have a heavy cold – and then everyone else ends up getting sick. The theory can apply with general wellbeing and fatigue too. “When we soldier on, we make ourselves so exhausted that the very people we want to help and support, we can’t do it anymore,” says Arroll. “So you absolutely have to follow that advice of putting your own oxygen mask on first.”
:: Taking back control
Getting to grips with not over-committing can be a vital step towards regaining a sense of control, rather than feeling like your health controls you. “Often when people put this sort of pressure on themselves, they can over-schedule, because they feel guilty for letting people down in the past,” explains Arroll. “And when you have a long-term illness, when you over-schedule and don’t pace, especially if you’re having a symptom flare, then the likelihood of cancelling again is really high, so that can be a vicious cycle.”
Plus, while it might feel like you’re missing out at the time, by listening to your body, registering your need for rest and creating boundaries that optimise your overall wellbeing, in the longer term, your quality of life will be better.
“Quality of life is really key,” says Arroll. “Focus in on that: it’s not quantity that matters. With good friends, it doesn’t matter if you’ve gone a while without seeing them, the conversation picks right back up again – and they would want you to be as healthy as possible.” And isn’t that what you’d like for them too?
