“When will it ever end?”

“When will it ever end?” or “Will it ever end?” is a recurring and ever so slightly desperate query on the RD support group site I belong to.  A few weeks ago, one of my eye buddies commented that his eyes have been stable for around eighteen months after three years of temporary sight loss due to diabetic retinopathy, numerous operations, sadness and anger.  But he went on to say that he knows the time will come when he has another bleed in his eyes and the bottom will fall out of his world once again.  This fear of further issues is one which those of us who have had multiple detachments and complications all share.  It’s unsurprising that we feel this way, considering that we’ve all lost a certain amount of vision already.  According to Moorfields Eye Charity, more than eight in ten British people say that sight is the sense that they would least like to lose.  (Presumably the remaining one and a bit people are the ones who have already lost their common sense.)

The fear and accompanying anxiety can be exhausting at times.  A month or so ago at work I was obviously looking particularly knackered, as a colleague asked me if I was having trouble sleeping again.  (See ‘To bed, perchance to sleep..? (Aye, there’s the rub!)’ for an account of my typical nocturnal experience.)  When I nodded, he exclaimed incredulously, “Well what are you worrying about now; you don’t have another Moorfields appointment until January!”  I thought it unwise to point out that, unfortunately, Moorfields is unable to issue a decree at one appointment commanding my sodding retinas to behave themselves until the next check-up.  I also thought it probably wasn’t worth explaining that in all of my waking hours, eye-related anxiety buzzes around my head to a greater or lesser extent, like a wasp waiting to sting.  So instead, I just sighed inwardly that frustrated sigh of, “Is it really that difficult for some people to understand?”  Apparently, it is.  When I told my Dutch eye buddy that I think our eye problems are the hardest thing to deal with in life, she said:

When I first had my initial surgery I mentioned that period as the darkest period of my life.  People stared at me like I wasn’t normal.  They totally didn’t understand.  From that moment I never mentioned it again.  I think that made things even harder for me.  The not being able to share, because no one ever listens really or even tries to understand; that’s what makes it so hard to cope with.

It’s my Dutch eye buddy who has been the latest person in our group to ask the recurring question, put specifically as: “Will it ever stop?”.  She’s already had three lots of surgery on her left eye and one on her right eye for retinal detachments.  A couple of weeks ago, after months of intermittent worrying that something wasn’t quite right, she was diagnosed with a macular hole in her right eye and is now scheduled for her fifth lot of surgery this coming Tuesday.

Fortunately, she’s since felt able to talk about her eye issues to a few people, explaining about what she can and can’t see and describing the posturing she’ll have to do after the macular hole surgery.  She told me what a difference it makes when people are interested and try to understand, and how it makes her feel cared for.  Having people around who attempt to understand unfortunately doesn’t make it all go away, but it does make it slightly easier to cope with.  Of course, this doesn’t mean that we need people to be constantly asking us how things are with our eyes.  There are many different ways of showing compassion.  Considering the fact that we can’t answer the question, “When will it ever end?”, I guess the only thing to do is to try and find better methods of coping with it.  With that in mind, if everyone could just send a huge beam of positive vibes across to my eye buddy in the Netherlands on Tuesday, I’d be very grateful…