I’m finding that conversations I have with people who aren’t close friends are falling into a pattern. The same phrases keep coming up. Having said that, I was really impressed that none of the following came up when I went to a band reunion last week (thank you). I’m not doubting the good intentions of the person saying them, it’s often because they don’t actually know what to say. But when you hear the same things over and over, it’s hard to ‘let it go’ and not to get upset by it. I’m not unreasonable, sometimes things are said without thinking and that’s fine. And I’d also like to make the point that I’m not writing about anyone in particular- it’s partly my responsibility for not having explained why I don’t like hearing specific phrases. So here’s what usually happens:
I’ll nearly always reply ‘fine thanks, you?’ if you ask me ‘how are you?’. Which usually leads to:
Feeling better? Or When will you get better?
It doesn’t work like that. I don’t have something people suddenly ‘get better’ from. There are two reasons I dread hearing this:
a) it implies that people are waiting for me to rejoin the realm of ‘the healthy people’, sometimes with good intentions, sometimes not.
b) people tend to get upset when I say that it might not/is unlikely to ‘get better’.
Thinking about scenario a) does that make my life worse than someone’s who is healthy because I’m ‘not better’ yet? Even if you’re saying it with good intentions, it still feels a bit like that- like I’m different or ‘missing out’. Some people even say it because they ‘can’t be bothered’ with the unhealthy version of me. I’m not even going to respond to that.
Looking at scenario b) is more tricky. I feel that I have to somehow protect the other person when I’m explaining this to them. They tell me how upset they are, how frustrated I must be, how unfair it is etc (all nice sentiments) and I find myself consoling them. Some people have cried. Which is really weird- it’s me that’s ill, but I’m trying to make the other person feel better??? Most of the time, it’s because they’re genuinely upset for me, which I appreciate, but when I’m having this conversation on a weekly (and more) basis, it’s really emotionally draining and upsetting.
So then the other person tries to find something positive to say:
At least it’s not cancer.
Can we just pause and think about this for a second: Would you like it if I said to you ‘at least it’s not pneumonia’ when you have a cold? Or would you say to a person with cancer ‘well at least you’re not dying from it’? I don’t want to have cancer, nor am I comparing my illness to cancer. Because it’s different, and that’s part of my point. Sometimes this is said with a ‘I need to find something positive to say’ attitude, sometimes with an ‘other people have it worse than you’ outlook. I don’t actually need either, but that’s a blog post for another day.
No, it’s not. It’s the same as comparing a homeless person’s life to a millionaire’s life- you can’t put them in the same bracket. Illness is a part of life, yes. Being ill without an end date, having to radically change how you live, losing your ‘old’ life and finding every day tough is not. It sucks, and it should be ok to say that sometimes without it being followed with a shrug and a ‘that’s life’ comment. But, most of the time, I haven’t actually said anything negative about being ill- it’s usually said by the person asking me, because they’re trying to justify what’s happening to me in their own minds. So why do I need to hear it?
Then people tend to catch themselves and try to say something humorous:
It must be great staying at home all day…
I’m all for a joke, I joke a lot with my close friends. We laugh about how it’s a perk to stay at home all day in my PJs. But from anyone else, it sounds really dismissive and I will not find it funny. I’d love to have a job, to be able to go out without having to meticulously plan and to not have to ask myself questions like ‘if I shower now, will I have enough energy to make lunch?’ If you’d like to swap, let me know!
People often get a sudden ‘lightning bolt’ moment at this point. And suddenly start trying to ‘cure’ me:
Have you tried…?
Again, said usually with good intentions. And, soon after diagnosis, I would probably have been grateful for the suggestions. But I’m 2 years in now, I’ve tried most things and done lots of research. It’s also not simple- I’ve seen some very senior HCPs who are sometimes/still baffled. Unless you’re one of my really close friends or know anyone else with the condition (or similar), I’m unlikely to find these comments helpful, so please don’t take offence when I haven’t followed up on your suggestion the next time we meet.
After I’ve smiled and said ‘thank you, I’ll have a look’ at whatever has been suggested, thoughts usually turn to my husband:
At least you’ve got your husband to look after you.
This makes me feel guilty. I rely on him and my close friends to help me do stuff, and I’ve only just gotten good at asking for help rather than struggling. I hate having to rely on people, and the fact that I might be ‘inadequate’ or a ‘burden’. Aside from making me feel guilty, it also makes me feel like the only positive thing you’ve got from our conversation is the fact that I have a husband- so it also makes me feel like I don’t exist as a human being in my own right. Again, it’s another ‘positive’ comment people say when they don’t know what else to say.
The next phrase doesn’t necessarily have a ‘place’ in the conversation, it sometimes comes later on, but comes up quite a lot. Some people say it because they think I’m over exaggerating my condition, others say it as a type of joke.
Yeah, I’m tired too or When you have kids you can complain about being tired!
I’m not diminishing people’s tiredness- it’s not very often I turn around in a conversation and say ‘tired? you want to try having what I have!’ unless you’ve really annoyed me or you’re my close friend and we’re joking. So I find it difficult when people do the same to me. My tiredness doesn’t go away with copious amounts of caffeine. My tiredness has the potential to kill me (not an exaggeration), and not in the ‘I’m so tired I nearly burnt the house down’ kind of way. I understand that people will be tired after having children and in meeting their demands, but it’s different.
I’m not an ogre, I know it’s sometimes hard to know what to say. I appreciate when people are genuinely asking after me. It’s a big part of my life at the moment, so of course it’ll come up in conversation, in the same way that people talk about their jobs/children/pregnancies, for example. To people other than my close friends, I try to be practical about it and don’t want to feel negative about it. If you have questions about it or are interested, ask. But if you just want ‘general chat’, please accept my ‘I’m fine thanks’ response and try to avoid these phrases. 🙂