… sometimes I feel an almost irrepressible urge to smack people in the mouth because of some of the incredibly tactless things they say concerning my eye issues. One friend responded to the news of my second detachment with the blasé comment, ‘Oh that’s annoying!’ ‘ANNOYING?!’ I wanted to scream at him, ‘ANNOYING?!’ Dropping a pint of milk is ‘annoying’. Stepping in dog pooh is ‘annoying’. Running out of teabags is ‘annoying’. Having your retina detach for the second time is a tad more than merely ‘annoying’. This friend was very lucky to have made this remark via text rather than in person. Another comment which tends to make me gnash my teeth and revel in murderous thoughts about the person uttering it is the classic, ‘Oh, but you must be positive’. Now firstly: positivity isn’t going to make the retina stick. Don’t argue. That is a scientific fact. If you don’t believe me, ask any retina surgeon. Secondly, anyone who has been through retinal surgery will know that you simply have to be positive just to get through it. Why on earth would we put ourselves through more surgeries if we weren’t positive in thinking that the next one will be the one which is ultimately successful?
As with most things this works both ways of course, and some people have said things to me which have helped massively and I tend to file these comments away in my head and fetch them out when most needed. A few people have told me to just take one day at a time, which is certainly a sensible way of managing the situation. A work colleague advised me to ‘make the most of every single joy’, which is also helpful as there is always something which fits into that category, even if it’s simply managing to get an eye drop in first time. A complete stranger on the RD Facebook support group page wrote a post before my third surgery, ‘You’re gonna ace this!’ and I found myself repeating it to myself when I woke up from the anaesthetic. During one long day of posturing after surgery number 4, I was talking to Lucy about about how some people say incredibly thoughtless things and yet other people say things which can help enormously. I thought it might be amusing to come up with a tongue-in-cheek list of ‘useful things to say to an RD patient’ versus ‘unhelpful comments’, and so I posted on the RD Facebook support group to ask what my fellow eye buddies would say. Here’s a list of my top ten comments in each category:
Unhelpful things to say to an RD patient
- ‘Your eye looks fine to me’.
Yep, it may well look fine, but this doesn’t tell you anything about how it feels, the degree of vision remaining, or what’s going on at the back of it.
- ‘Comparing RD surgery to cataract or LASIK surgery.’
Hmm, not the same… there’s a big difference between the front and back of the eye.
- ‘At least you have your other eye’.
We have two eyes for a reason. Also, ask anyone who’s had a retinal detachment in one eye and they will almost certainly tell you that the huge thankfulness they have for their good eye is matched by a similarly huge amount of terror should anything go wrong with it. A person is 10% more likely to experience a detachment in their other eye if they’ve already had a detachment in one.
- ‘Are your eyes all better now?’
People are never simply ‘all better’ with retinal issues.
- ‘You can always get a guide dog’.
Do I really need to explain why it’s a bad idea to say this?
- ‘You should be used to the surgery by now’.
Being used to the surgery certainly doesn’t make it any easier!
- In response to the explanation, ‘Well, if I shut my good eye, I can’t see your face properly’: ‘Well that’s a relief, you’re not missing much’.
- ‘There’s always someone worse off than yourself.’
I’m well aware of this. The problem is with my eye, not my brain. Thinking about this just makes me feel more depressed.
- ‘So-and-so is blind/only has one eye and he/she manages okay.’
This is a tricky one. On the one hand it is often very helpful to hear about how other people cope. On the other hand, everyone is different, everyone’s eyes are different, and experiences, circumstances, and eye conditions vary wildly from person to person.
- ‘Can you not do such-and-such [insert wildly inappropriate activity] whilst posturing?’
If in doubt, try maintaining the relevant posturing position for an hour yourself whilst doing said activity, and then you’ll have you answer.
Useful things to say to an RD patient
- ‘Just take one day at a time.’
- ‘Chin up, face down!’
- ‘Stay strong – you can get through this’.
- ‘I’m praying for you / sending positive vibes / thinking of you.’
- ‘Is there anything I can do for you?’
- ‘Everything will be alright in the end, and if it’s not alright, it’s not the end!’
- ‘Make the most of every single joy.’
- ‘Use the time you’re out of action to listen to something that you wouldn’t normally have time to listen to.’
- ‘How are you feeling?’ (and listening to the answer.)
- ‘Here – have some chocolate!’ (extra points if providing chocolate) 🙂