How to stay positive overall despite a chronic illness

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As someone who has had a chronic illness with debilitating fatigue and pain for over 16 years, I can find this time of new year resolutions and the general optimism associated with these difficult to be around. I might want to improve my health but keeping it realistic to my limitations can be challenging. For example, this year inspired by this article (10 minutes walking) I resolved to walk at least every day for 10 minutes. Then I realised that wasn’t realistic, so altered it to 5 days out of 7. Then there is the actual reality of daily life with an unpredictable and fluctuating condition.  So today, as I sat contemplating doing my walk (which I did with great ease and gusto yesterday), I felt like I would be pulling myself through mud with a pile of cement on my back.  I took a moment to pause and reflect on what was going on.  I had to acknowledge that this was a genuine fear warning (beneath the ‘I’m just being lazy’ judgment) which I noticed, alongside a familiar volition to just push myself to do it.  As I contemplated, a kind of middle way opened up which suggested that perhaps I could do something else, like go and up and down stairs a few times or engage in some stretching, or even hop on the exercise bike (which sits like a piece of modern art/clothes collector in my room).  I did the latter just for 8 minutes and feel immensely proud of myself.

Staying flexible

As my experience I hope demonstrates, I believe that it is necessary to keep an approach of flexibility and receptivity to how the body is in any given moment. This in turn can help make a better choice in terms of what activities are manageable. So, I find it helpful to measure what I can achieve towards my overall intention in a kind way that doesn’t compare how I am doing to others or to how I might have been able to do things in the past. 

Be realistic

Often just simply clocking that my mental state or mood is quite low, or that I feel tearful or angry about the debilitating nature of my condition and realising that this is perfectly understandable, can help to ease it a bit.  The more I keep trying to run away from the truth of my current experience, the more trouble I find I shore up for myself.  I make it worse by adding a layer of judgment to what is already a painful experience.  So being realistic and taking into account the impact being in pain or feeling fatigued has on my overall mood is a good choice.

Attitudes to our self: Compassion is crucial

Noticing this connection between mood and pain/fatigue must be met with a compassionate response as well or, in my experience, it’s all too easy to use it as a reason to feel even more miserable.  I sometimes say internally to myself in a soft tone of voice: ‘of course, this is hard. It’s ok and perfectly understandable to feel like this.’  People often say to ask yourself if you would treat a friend or a child in a disparaging or judgmental way if they were presenting feeling as I do.

Stop comparisons 

In fact, if one is going to do a comparison, I can recommend taking a quiet moment when you won’t be interrupted to think back over a certain timeframe and jot down what changes or improvements there have been in that time. Invariably, whilst the highs and lows, good and bad days are prevalent, overall, I notice a general steady upward trajectory. This always gives me a reality check especially if I have gone down a depressive hole of frustration or despondency about my condition.

Noticing the positive

One of the best strategies I am aware of that’s worked for me has been quiet reflection and noting down at bedtime what’s been beautiful/pleasurable or comforting about my day.  This can vary from small things like a stranger smiling warmly or holding a door open, to more significant things like taking a positive step of self-care when my symptoms flared up, or enjoying the sun momentarily shining amidst the rain.

Pleasurable activities

Just bringing a simple bit of unadulterated pleasure, and to do this routinely, can also assist. Last year, due to my health, I chose to stop attending my adult drama class.  Whilst stopping did improve my energy levels, especially not having to go out in the dark evenings, I have noted that my sense of pleasure, self-expression and opportunities for laughter have diminished.  So, it’s always helpful to keep weighing up what are the priorities on any given day, and sometimes pleasure is key.  This festive period I have giggled my way through a series which I loved, and it’s been a real tonic to my mood.

Do something for someone else

This can really work if you are feeling caught up in a low mood or prepertual negative thinking. It doesn’t have to be a grand gesture; just something small works just as well.

The art of self-care

It has taken me almost 50 years, and 16 of those living with a chronic condition, to finally realise the importance of the art of self-care. I call it an art, because it feels like it’s a creative process that needs the right attitude and it can take practise too.  Having always tended to be someone who’s very driven and motivated by the dopamine hit of ‘getting things done’, I have had to reteach myself how to use this in a way that is conducive to self-care.  What I mean by this is that it’s ok to desire a sense of satisfaction and being honest with myself that hurtling through a to do list with a forceful attitude doesn’t actually make me very efficient, and in fact is more likely to exacerbate a symptom flare up.  I can still achieve things but in a very different way. I have had to practise and keep regenerating my positive motivation to live in accordance with this approach.  Realising my basic human need for rest and restorative activities has finally alerted me to prioritising ‘unplugged’ times when I put everything down and just flow with whatever feels most soothing to engage in or to simply not be productive at all and stare out of the window at the sky for as long as my heart desires.

Sharing and connecting

It can be tough living with a chronic condition living alone (as I do) or with others when the other person has their own challenges and responses in relation to it.  It’s been my experience to try to have a small mandala of different types of connection such as evening classes, neighbours, colleagues and friends to keep me from becoming too isolated, especially if I feel low.  Sharing with others who are in a similar place can sometimes be helpful, sometimes not.  For me, having a therapist has been invaluable.  A problem shared is a problem halved as the saying goes and often the act of ventilating my experience (to a supportive other) can help me to regain positivity.

Positivity can be a glimmer

Finally, I think it’s important to state that having a realistic version of what ‘positivity’ as a value might mean to you is crucial.  For me, it can be quite subtle and often is more of a vague glimmer or warmth rather than full on blazing, bouncy positivity.

Written by Katherine Sewell