Today is international ME/CFS Awareness Day, so there’s no better time to be talking about this debilitating and distressing illness, which affects the lives of many. Each year, during ME Awareness Week, people come together to raise awareness of the illness, and also fundraise for this very worthy cause. However, it’s important to appreciate that empathy and emotional support is still severely lacking for those who live it. There are a few things you can do that will really help a person with ME, and ultimately lessen the challenges they already face.
You can see ME as so much more than just fatigue: ME is an illness defined by a range of complex symptoms, and having an appreciation of this is very helpful. Take a look at my It’s Not Just Fatigue article.
You can listen without assumptions or judgements: Listening is key to really understanding ME and shifting perceptions. Through listening in this way, you’ll gain an understanding of the person’s experience of the illness and how they feel. You’ll also be providing an opportunity for the person to talk about things, and we all need this from time-to-time.
You can appreciate the emotional pain: The person may struggle to adjust to a life with ME, and the overwhelming symptoms and change in their lifestyle may result in anxiety and depression. Providing a listening ear to talk about the emotional impact of the illness is therefore really helpful.
You can appreciate its hidden depths: ME doesn’t have a recognisable face, and what’s hidden may be perceived as “not being there”. It’s all too easy to dismiss an illness because of its invisibility, yet its worth remembering that many people wouldn’t want to be questioned about how they feel. It’s therefore helpful to “look beyond what you see on the outside”.
You can appreciate changes in the person’s lifestyle: A person with ME will be doing things differently to you in order to function day-to-day, and although you might not observe what these things are, its important to let-go of expectations and trust in what they need to do. You can try to understand these changes by gently enquiring about them.
If someone you know is really struggling with the illness, please take some time to really be there for them.