18 months in to having ME/CFS, I was finally referred to an NHS fatigue practitioner. Getting there was exhausting, including a lengthly drive and an unexpectedly long walk inside the clinic to get to the appointment room, which was both tiring and scary when you feel you might collapse at any moment.

Being at a medical facility again was also its own challenge emotionally, and having to explain my story again to someone new was also overwhelming. So I was flagging badly by the time I made it into the room.

After saying hi, within a minute the practitioner made a comment on how far the room was from the front desk and that it must have been challenging for me to walk there.

Taken aback, I agreed with her and then burst into tears. This was the first time that any medical professional had acknowledged my experience and the difficulties of it, and the simple act of kindness hit me like lightning. I hadn’t realised how much of a burden it was to feel unacknowledged and unsupported until it was released.

I’ve encountered this only once since, at a GP appointment with a trainee doctor. She asked me about my ME/CFS and sympathised with my experience. As I left I made sure to tell her that I appreciated her doing that.

It’s difficult to know how to respond when someone shows you some kindness, if you’re not used to it. It feels impossible to communicate the experience of having ME/CFS, and do we risk opening up our defensive layer and explaining how we really feel?

I try to acknowledge people’s experiences when talking to loved ones. It’s not always easy but it’s a gift that we always have the power to bestow.

Acknowledgement doesn’t need solutions, or even experience of the issue. It’s just listening and reflecting someone’s experience back at them, understanding that this is what’s happening for them. It’s a simple act of kindness which can mean such a lot, especially when diseases like ME/CFS can make people feel isolated, vulnerable and misunderstood.