Why is communication important when you have ME∕CFS?

For many living with ME/CFS, a big part of your fatigue pie is the ‘social slice’. Many of you will have faced stigma around your diagnosis, or a lack of understanding in the world around you, from medical professionals, or even those closest to you including your friends and family. At the same time, we know that talking about ME/CFS is not easy, and is difficult to explain, even for clinicians.

This difficulty in communicating about ME/CFS can have a big impact on life. For example, it can affect how easy it is to access help, whether this is medical, financial or other support you need. This can be incredibly frustrating, upsetting, hurtful and stressful. It may have understandably led you to giving up on talking about your experience of ME/CFS an what is happening for you, or not having your needs met.

It can also affect your relationships with others. For example, if you think “They’ll think I’m a burden”, this might hold you back from seeking help, or trying to explain when you need a rest or you are feeling overwhelmed. You have likely found yourself feeling guilty about cancelling plans or you have decided to ‘push through’ even when you don’t feel well, leaving you feeling exhausted even after you have rested.   

However, talking about ME/CFS is not easy, especially when you have been faced with unhelpful or hurtful responses in the past. Because of this, it can be essential to find ways to communicate with others more easily and effectively. One skill that can help with this is assertiveness.