In my experience it can be difficult to get non-sufferers to properly engage with M.E. advocacy efforts. There can be many reasons for this. Perhaps they find it upsetting to think of the depths of their loved one’s suffering. Or they don’t have M.E. themselves so can feel too far removed from it all. Sadly, for some, it’s a case of “I’m Alright Jack” where they feel they don’t need to get behind our cause because their life is perfectly fine thank you. Whatever the reason, they may not seem as fully invested in our cause as we are.
This can be sad and frustrating and hurtful for us as sufferers. Our lives have been turned upside down by this illness and so it can feel like a slight, when those around us don’t fully engage with blog posts or our petitions or with choosing an M.E. charity for their own sponsored event.
This is where the tea party really helps me. It’s been a way to involve the people around me, who do not experience M.E. first hand. Rather than feeling rejected that they don’t read the latest articles on the latest research into M.E, for example, I invite them along. I’ve found offering tea and cake is a very good way to persuade people to get behind the cause. A really good way! The tea and cake is what brings us all together and ultimately what gets people through the door!
Each table has information leaflets about the illness, articles discrediting the wretched PACE trial, a case study about a sufferer with Very Severe M.E, and information about what the ME Association does on our behalf.
While catching up over tea and cake, they have the leaflets to read. I’m around to answer any queries about the condition that they may have. My husband and my parents help with that too. I throw as much information at my tea party guests as I possibly can, but behind the loveliness of a tea party.
For me, M.E. Awareness week can be quite depressing. I already know the devastation this illness causes. And to see so many others suffering too, through social media campaigns, is so upsetting. If I find it hard as someone who does ‘get’ M.E. I can understand how non-sufferers can feel the same. But the majority of people joining in with such campaigns are sufferers themselves. Their immediate families may join in too but we don’t always get people outside of our immediate circles participating with us.
The tea party allows me to reach a wider audience outside of the M.E. community. An audience that may not have encountered M.E. before, and certainly hadn’t known the true facts as the only information the majority of my guests had ever had was taken from media outlets who leave much to be desired in terms of accuracy. I’ve had local people arrive on the day with no previous knowledge of M.E. They’d just seen in the local paper that there was tea and cake at a village hall across town on a Sunday afternoon and decided to pop by! Fantastic!
For most of the people that come to my tea party, I am the only M.E. sufferer they know. It is incredible to have their support year on year. We have family friends who are GPs and nurses, or trainee doctors. They’ve all been and they’ve all had leaflets thrust at them as they sip their tea. I always hope people leave knowing more about M.E. than when they arrived.
For me, it is always an uplifting day. And that is what I need during M.E. awareness week, where I often feel like I can try to educate people until I’m blue in the face, only for them to never fully engage with what I’m trying to say. The tea party allows me to educate non-sufferers in a way I am otherwise unable to do so. I hope you’ll be able to join me.
Funny what tea and cake can do.