“Sharing and processing emotions can be a powerful tool for healing”

Receiving a macular disease can leave you feeling frightened and uncertain about the future as you navigate something you didn’t expect.

Suzanne from the Macular Society’s counselling team shares her advice for anyone struggling to come to terms with a diagnosis and highlights the importance of emotional support.

We’re all human

Coming to terms with sight loss looks different for everyone, Suzanne said. Many people feel overwhelmed as losing your sight can be isolating, frustrating and many compare the experience to those of grief. Suzanne said the first step is allowing yourself to acknowledge these emotions.

“Often people are really hard on themselves,” Suzanne said.

“They will say, ‘I've always been really strong all my life. I've always coped with whatever's thrown at me and look at me now’, and it's just realising that we're all human and we're all going to deal with traumas throughout our lives.

“I think that part is the best part of my job is actually speaking to the people that come our way, that trust us with their stories. There's a lot of trust involved.”

There’s always room for hope

When people contact the Macular Society’s counselling service, they can be feeling very low. But Suzanne said despite the initial fear and uncertainty, many find strength and resilience they didn’t know they had.

She said: “The resilience of people always amazes me. People can and do bounce back even when they're faced with such adversity in their life. I think that's always so rewarding when people will say things like, ‘If you'd have told me so many weeks ago that I would have felt as I do now, I never would have believed you,’ or ‘I never would have believed I could feel this calm.’

“For me, it's always having hope that no matter what your circumstances are, something can shift. Even if it's achieving a little bit of contentment. You're not necessarily going to perform miracles, but I always believe there's room for a little bit of manoeuvre.”

Reimagining your future

According to Suzanne, one of the things people find hardest about a diagnosis is the unexpected curveball it throws you. No one expects to be told they will lose their sight. 

Suzanne’s advice is to start rethinking the future you once imagined. She said: “Life can be hard, can't it? For all of us. But, it’s hard if you have anticipated a different future. If I ask you what you thought you might be doing in 20 years’ time and, we envisage a future, and then something like a diagnosis comes along and completely throws everything up in the air, how do you repack it? That's hard.

“There was somebody at a school where I worked, he had two boys, twins, and they both had cerebral palsy. I was just talking to him, generally. They're both in a wheelchair. And he said to me that on the day that they were born, one of the nurses said to him, ‘you've got to change the picture in your mind that you envisaged to the one that's here and now’. And there's a big similarity there.

“We all have stories in our mind of what we think the future will look like but it often doesn’t work out that way.”

Talking can help

A common misconception about counselling is the belief that talking about your struggles won’t help. Suzanne said. “Many people say ‘what’s the point of talking about it?’ and you could apply this to any type of counselling. But, sharing and processing emotions can be a powerful tool for healing.”

Feeling heard and understood can be transformative, especially during difficult times.

"For me, if I think about the impact of not being listened to or the impact of not being heard or not being understood, I think that is huge,” Suzanne said.

“I've felt like that during my lifetime. So, to then experience the opposite side of that, to feel that somebody's really taking the time to understand you, is huge. That's where my passion is, that I think it can bring about change. It might not solve everything, but it might just lead you on to believing in yourself a little bit. Having experienced not feeling listened to at a very young age, to then experience the reverse of that and to feel that somebody really gets you is worth a huge amount."

Accepting help doesn't make you weak

Suzanne added: “There are people who will also say, ‘I've always coped with everything, so it's seen as being weak’. That comes up quite a lot. Or ‘I shouldn't need this. I've never had counselling in my life.’ And it's not about needing anything. We all come across times in our lives when we need support, every single one of us, no matter what we've coped with. And sometimes it's about just having a little bit of a helping hand onto the next step.”

Suzanne added: “People will also compare themselves to others, saying ‘there'll be people that need this time far more than me.’ And then it goes on to, ‘I've got a nice life, nice house. Everyone's more worthy than me.’ With mental health, some people feel that there's a real stigma and they want to bury the fact that they're not coping as well as they once did, and they just think that it will pass. And for some people it might, but for others, they do need that support.”

We can all be surprised by changes in our mental health

Mental health can be unpredictable, and just because this is not something you have ever struggled with, it doesn’t mean you won’t. Suzanne highlights how changes can happen at any stage of life.

She said: “I think something that I've definitely learned, is it doesn't matter how old you are, we can all still be surprised by changes in our mental health or our levels of anxiety, or we can still be very sensitive. We can still be very hurt. Just because you've reached a certain age it doesn’t go away. I can remember being younger assuming that by the time you were 50, nothing was going to bother you. And yet I speak to people who've been really quite upset by, for example, dynamics in friendships or fallouts within the family.

“So, just because we get older doesn't mean we hurt any less when things go wrong.

“It doesn't matter how old you are, when something hurts, it hurts."

Stories of transformation

The counselling team have many positive stories about how counselling has helped rebuild confidence and allowed people to retain their independence and even try new things.

Suzanne highlighted the experience of one lady who was initially devastated by her diagnosis, but worked through her challenges with the team.

Suzanne said: “She’s gone back into work, booked holidays, bought a new car, and planned a family party. This is somebody who couldn’t see a life, and then suddenly you realise that this person is actually embracing life.”

She added: “When you hear people are going back to doing the things that bring them joy, that makes me feel really warm inside. It's lovely. You feel really proud of them, and you're almost giving them a virtual hug.”

Set your own goals

Suzanne and her team work with everyone individually to make help them overcome challenges sight loss has presented to them. But, this can be different for everyone.

“It's for that person to achieve what they want to achieve,” she said. “It's their goals, not ours. It is so rewarding to hear. It really is.

“Somebody said to me last week something along the lines of, ‘what are our plans going to be or what are we going to do next?’ I said to her, ‘well, let's just see what happens, let's just see what comes out of it and what you want to achieve from it.’

“That shouldn't be anything that comes from me, it's what that person wants to achieve and sometimes it's not about any goal as such. It might just be feeling a little bit calmer and feeling that you can manage, feeling a little bit more confident in your own capacity to manage.”

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