Chronic illness and the importance of pacing

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Pacing is one of the most important skills to master when you are dealing with chronic illness, especially if you are dealing with pain that results from exertion, or fatigue. Pacing is really about understanding your body before it gets pushed too far.

The simple idea of pacing is to avoid overdoing activities. You might know your limits for things, but you may need to assess new limits, limits for keeping your symptoms as under control as you can.

Human interaction and human society is in one viewpoint, based on the exchange of energy. Everything you do in a day, in life, has an energy cost, and in society we loan our energy to activities to both collect material value (such as money) and personal value (such as experiences, connections, skills and knowledge). With chronic illness, a lot of your energy goes into managing your symptoms, and you simply don’t have much energy left over to live a normal life.

Before becoming ill, usually people have an expectation for what they need to do to get what they want, for example, get a job to afford a house, security and possessions they desire. But chronic illness alters these expectations, priorities and values change.

What you can feasibly do is changed with chronic illness, yet many people find themselves trapped with responsibilities or desires that go beyond their limit. This ultimately leads to worse symptoms, frustration, stress and a feeling of hopelessness.

You should try to look at your situation with realistic expectations. Think about how much you can do before you cause your symptoms to either flare up or worsen.

Everyone’s situation is different, so it’s difficult to advise a general plan on how to organise pacing. Life is exhausting without having a chronic illness to deal with, so I guess the best way is to prioritize what you need to do, and don’t blame yourself for not having the cleanest house, doing overtime like everyone else you work with or going to every social event you’re invited to.

Equally you shouldn’t blame yourself if you have no job because you have pain and fatigue, if you have no friends to invite you because you either pushed people away or never got the chances to build friendships. With small steps, most of your desires can likely be achieved. It’s important to remember that your current situation doesn’t define you, nothing does.

But it is easier said than done, altering your life doesn’t have to be done in a day. Make long-term targets to get your pacing under control and work on them as a goal to achieve in a year rather than something to achieve today.

Make little changes that stick, rather than big changes that will fall apart. Split up tasks as best you can. Doing the bare minimum is a success, not a failure if you’re dealing with fatigue.

Don’t blame yourself for not matching up to your “normal” self, it’s a bitter pill to swallow but your old normal self doesn’t exist anymore, and might never do again. Try to direct any frustration into anger at your condition. From my experience, directing anger at people close to me, was futile and didn’t help my situation even if they deserved it.

Learning to say no politely to unreasonable requests is a must. The thing is, only really you know what is unreasonable for your health state, so don’t feel guilty about refusing social invites, or cancelling plans. Your mental and physical health are priorities you can’t afford to dismiss when you’re 100% healthy, let alone struggling with the day to day trials of chronic illness.