Last Friday I was at a school friends’ wedding (I know the bride and groom from school) and I got asked this a lot. It is a standard first question when you see someone regularly or not. In this case, about a third of the guests I knew but hadn’t seen since I was 18 when I left school. Most are now married and some have children. We’ve grown up and lived.
I hadn’t actually put any prior thought into the fact that this question would come up despite knowing that a number of these old acquaintances would be at the wedding. The first few times I was asked, I stumbled and replied with ‘I’m OK’ which is my standard response even if I am not feeling OK!
And so the day continued, mostly chatting to friends I had kept in contact with over the years and who know about my CFS/ME. Then I started chatting to one former acquaintance who I also follow on Instagram and we were chatting about running and exercise. I mentioned about my CFS/ME and he knew someone who suffers from it too so he could empathise and was apologetic. I emphasised the positive aspects; that I’m pacing myself and dealing with it through self-help strategies I’ve picked up along the way. It was a relief to have it out in the open and to have mentioned it. I could have gone through the day not mentioning it, yet having meaningful conversations with former school mates. But then I would have felt like a fraud. It would also not have explained the times I disappeared off for a short break or exited from the room that had the band and dance floor in. The music was loud, obviously!
So I had a positive experience of telling someone else who vaguely knew me about a very personal aspect of my life that usually has very mixed responses. I ended up telling a few more people once we had been chatting for a while. The reactions were all apologetic but positive once they knew what CFS/ME is, if they didn’t already.
I am aware that telling someone a few of the symptoms to give them an idea of what this illness is, without going overboard and boring them, can be quite the contradiction when you’re standing in front of them looking the picture of health; I was wearing high heels, my skin looked in good condition, I was chatting and laughing at jokes and I was eating and drinking normally – I didn’t drink much alcohol but I didn’t not drink it. But that’s one of the hardest parts of CFS/ME, it’s that it’s invisible and many people don’t truly understand that. Whenever someone says to me ‘you look well’ I have to take a breath, smile. Sometimes I joke that it’s the makeup.
Last Friday has taught me that while I am suffering from this, I don’t want to hide it, I want to share my experiences so as to raise awareness of it. People need to start to understand that there are many illnesses out these that are invisible and there aren’t many, if any that others truly understand and can empathise with unless they are suffering from it or know a loved one very close to them who is suffering from it. Even then, it isn’t enough just ‘knowing them’, they need to spend time trying to understand by asking questions, spending quality time with them in different situations so they can really begin to understand just how much an impact that condition, illness, disease has on them and for them. You cannot judge someone simply by how they look because you have no idea how they are feeling physically and mentally.
So asking someone ‘how are you’ isn’t going to get a true and meaningful response. ‘How are you feeling’ is, however. Perhaps not the question you would ask someone you don’t know well but it’ll show that you care and want to hear how someone really is as it encourages a more personal reply.
Try it next time you see a friend or family member. Then make it a habit.