My CFS/ME has got to the stage of being noticeable, at least some of the time, and obvious to people that know me well. Some people, usually when I’m using a lift, walking slowly, or generally not being coordinated, will ask what’s wrong. Others don’t ask, which is more weird, especially if they ask if you’re better the next time they see you. So I’m at the point of telling family and friends, before it gets awkward.
Telling friends you are seriously ill
For me, this is quite a difficult thing to do. Saying “I’m in debilitating pain, it’ll last for at least a year, and there’s not a lot doctors can do about it” to people who care about me, is always going to be sad, however you phrase it. I noticed this article in the LA Times, which helped, in a way, but as I’ve said before, I’m not dying, and it’s not as dramatic as that. But please do support my closest supporters if you can.
I’ve been writing down how people respond to my news, because it’s helpful, when I’m anxious about getting a negative reaction, to recall all the positive ones. There are three standard ways people have responded:
1. “I know someone with that.”
The most common instant response.Well yes. I’m sure you do. In fact you know two people, and one of them is me. Yes, in time, I’d probably like to meet them, just as I’d like to meet any of your friends you think I’d get on with. But please don’t assume that now we’re in the “same disability” box, we’ll have anything much else in common, when we didn’t have enough in common for you to have introduced us before.
It’s tricky to know where to go from that statement, because I have no idea how mild or how severe their symptoms are, or in fact, with this illness, what their symptoms are. So while your perception of my illness as the same as theirs is probably closer to the truth than having no preconceived idea, you have, in fact, stopped asking me what is wrong, and started telling me what is wrong with someone else I’ve never met.
However, the response “I know someone with that, and they’ve found it really helpful to do x,y and z” is definitely a good one – without that, I’d never have thought of blogging about it, and lost a good introvert’s outlet for my unravelling thoughts. Equally, “I know a mutual friend of ours, who had that, and recovered before you met them” is equally gladly received – if I know them already, it’s much more natural to have empathetic coffee together.
2. “Oh dear, poor you.”
Sympathy isn’t bad in itself, and it helps to have people who are trying to understand the implications of my illness. However, I’m not “being brave”, or anything courageous like that. Being brave is choosing to do something that’s difficult. I have no choice about it, and if given the choice, wouldn’t choose to be unwell. What I would like to choose, however, is to be able to continue to do those things that my disability hasn’t taken away, that I did before I got ill.
The sympathetic friends, who are so anxious to care for me, will try to make sure I’m not overdoing things so much that they proceed to assume that I can’t do things, without asking first, and that’s disabling. It remains my choice how I use my time and my energy, and that’s easiest to do when all the options are open.
But the sympathetic friends who ask me how we can adapt our previous social plans to fit in with my illness, by visiting me instead of expecting me to have the stamina to visit, and by calming me down when I get excitable that they have visited, have moved from “poor you” to “poor us, how will we cope with the impact this is having on our shared life together”. They’re shouldering some of the burden of my illness by going out of their way to allow us to manage some of what we enjoyed before.
I don’t know whether these people don’t know what chronic fatigue syndrome is, or if they’re just shy about talking about it. But I know that the adjustments people have to make in order to accommodate me well are considerable, both at work, and socially. Things like saying “you’re not visibly disabled”, or “yes, that’s fine, whatever you need” without really engaging with the underlying problem, don’t open the door to further conversations, when I need help. I’m the same person, I just need you to notice the way my life has changed, and the way that’ll impact you. I won’t always ask you to fetch me a chair, but I may stand longer than is comfortable because it takes more energy to lift it myself.
None of them are awful, but they aren’t perfect either. As I’m not “visibly disabled” (as one person put it), or rather, I look ‘normal’ at first glance, I’m well aware that these conversations come without much warning, and people can’t help their instant response if they’ve not previously considered it. I do always precede it with “I have some serious news”, or similar, and wait for them to put on a ‘serious news’ face before continuing. But why haven’t they considered it? Has it never come up before?
What to say: a textbook response
This week I had one textbook awesome response, (when someone spotted me taking a stupidly short lift) which I’d like to share:
- “So you can’t do stairs at the moment?” – literally, “I have observed something about you that has changed, please explain”.
- “I don’t know much about that, could you tell me how it affects you?” – even if you know someone with CFS/ME, or something similar, you open up the chance for me to talk about my symptoms, and explain what I understand of it.
- “If there’s anything I can do, or if you’d like to talk anytime, as a friend, please let me know.” – nothing prescriptive, just being open to help if you can. (This shouldn’t be out of kilter with our previous friendship – if we’ve always been open to talking about anything, it’s not going to be a massive leap to extend that to my current situation.)
I could try and engineer a Christian-tastic alliterative three-point phrase out of that, but I’m not going to. Let me know if you have any suggestions.