Managing expectations when you have a chronic illness

This particular subject is a tough one for people with chronic illness. In my case managing the expectations of myself and of others has been particularly difficult over the years. Chronic Fatigue Syndrome is all about energy and mainly lack of it! The amount of times people have said to me “but you don´t look sick”!! Well maybe not, but everyday I have to think about how much energy I have and how much I can expend.

As a previously active person managing myself can be frustrating, my head wants to do more, but my body doesn’t. Accepting these limitations can be hard, and I talk about acceptance in another of my posts.

But this is all about expectations so I will start with managing your own expectations and then about those of the people around you.

Your expectations

Trying to meet unrealistic expectations can lead to feelings of helplessness, guilt and stress. It is important to prioritise well and know your limitations. An interesting concept I found online is something called the Spoon Theory, imagine you have a bunch of spoons and each spoon represented an activity that you want to do that day. Many people can use a countless amount of spoons in a day but when you have an illness the amount of spoons you have can significantly reduce.

With Chronic Fatigue Syndrome even the smallest activities might be overwhelming, taking a shower, one spoon, washing up the dishes is another and on it goes. These types of activities we often take for granted, however, when you look at it this way you can see pretty quickly how many spoons we use up in energy each day and how quickly we can start to feel overwhelmed.

Trying to plan your days and use up the amount of spoons we can realistically manage is important and some days we are going to use less spoons than others simply because we don´t feel great that day and we have to try and be at peace with those days too.

Others expectations

Managing the expectations of others when you have an illness can be a tougher one to navigate, especially if people cannot see your illness. In my case I have had many occasions where I have had to cancel arrangements because of fatigue and friends have felt let down by me. There is also this horrible impression that some people get about people with chronic fatigue and that is that you are being plain lazy. Trying to educate the people around you can be a minefield especially when you have a condition that fluctuates (i.e. some days are better than others).

For me communication is important, explaining the effects of the illness can help them to understand it even if they cannot appreciate how it feels. Be open and express how you feel when someone is asking unrealistic expectations of you or is maybe judging you in a way that is not helpful.

Try not to over commit yourself and learn to say no if you feel that it is one activity too much for you. If I am invited to an event by a friend then I might say, “I would like to come but do you mind nearer the time”? This then does not oblige me to go if on the day I feel lower in energy.

Are there any other ways you can suggest to manage others expectations of you?

#chronicillness #expectations

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