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Invisibility of lupus

For anyone who suffers with lupus, perhaps one of the hardest things to come to terms with is that we often do not look sick. People tend to assume that if we look fine, we are fine. It can be frustrating to experience a lack of empathy and compassion from the people who surround us.

Having an invisible illness such as lupus can impact a person’s ability to live their lives the way they otherwise would. Even on days that aren’t marked by pain and chronic fatigue, people with invisible illnesses often have limited reserves and have to be very careful in deciding what to spend their energy on.

If you have an "invisible illness", some of you may have heard of the Spoon Theory, originally developed by a lupus sufferer Christine Miserandino.

The spoon theory is designed to be a way of talking about the impact of invisible illnesses so that people who don’t have those illnesses may be able to understand better. It asks people to imagine having to give a spoon for everything they do on any given day like:

  • Going to work

  • Engaging in a meeting

  • Playing with your kids

  • Making dinner

  • Washing the dishes

  • Taking a shower

  • Having a coffee with friends

According to the theory, most healthy individuals have more spoons than they need to get though any given day. But people with invisible illnesses have a very limited number of spoons, and they have to be careful how they use them because once they’re out, they’re out.

If you only had 10 spoons, what would you use them on?

That is the impact of invisible illnesses. There are only so many spoons to spare, and some days there are even fewer than others. On those days, you might find yourself having to stay in bed when you would rather be spending time with friends. Sometimes, there just are not enough spoons to give away.

There is no doubt that living with an invisible illness is difficult. Not only are the symptoms painful and exhausting, but the lack of spoons can leave you feeling isolated and alone so it is important to get or ask for help when you need it.

This article is intended to inform and give insight but not treat, diagnose or replace the advice of a doctor. Always seek medical advice with any questions regarding a medical condition.


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