I heard someone talk recently about how challenging things were for them at the moment. Their energy was going backwards, they were bedbound again and it all seemed hopeless. They spoke about how all the things they had been starting to reengage with in normal life were now impossible, and how soul destroying that was.

Hearing their story was sadly familiar, and many of us have had similar experiences of the brutal ups and downs of ME/CFS. The loss of purpose, of ability to contribute and not just be a burden, is particularly hard.

It occurred to me that, even in this bleak time, there is one thing they were doing that was uniquely valuable: sharing their experience.

By sharing their experience, they gave voice to the reality of the situation and validated both their own experience and the experiences of others. This is a precious gift that can be uniquely bestowed by people who have direct experience of the reality of ME/CFS.

It’s particularly valuable in the most challenging and isolating situations, such as when someone is bedbound. When the world is darkest, that voice of understanding, empathy and validation is deeply important.

It’s also an act of courage to share your experience when it’s not all golden. They spoke about how they were reluctant to share their experience in case it lowered the tone, and that fear is understandable. The courage, the vulnerability in saying that I feel weak, even broken, is a hand reaching out to other people to say that it’s ok for them to have and share these feelings too, that they are not alone.

I had felt similar reluctance to share my difficult feelings and experiences, and it was their courage in sharing the reality of their situation that made me realise the power in their disclosure, and the gift that it was.

That’s not to require everyone to disclose everything, of course not. Instead, it’s to say that even your most challenging experiences can have value, and there are always other people who understand. And by understanding and validating other people’s experience, we are able to help them too.

When everyone is surrounded by walls of isolation, fear, loneliness and pain, we end up sitting alone in the dark. Everyone else seems to have a blazing spotlight, but we have only the smallest candle.

When someone has the courage to lower their battlements and share the raw, unvarnished truth about what’s going on, it can be terrifying; how can my candle compare to a spotlight? But when you’re alone in the dark, that little light makes all the difference. A spotlight blinds and makes you feel inferior; a candle warms and lights your path. And once your eyes adjust, it becomes clearer that there are many candles all around you, just like you, guiding you on your way.