Emotional rollercoaster – coming to terms with sight loss
NCBI News often brings you news of practical products and developments that can make life easier for people who are blind or vision impaired. But what about the emotional issues that people face when coming to terms with reduced vision?
This area is a huge focus of NCBI’s work with people with vision impairments, as people deal with sight loss at different stages of their lives. Here we look at some of the difficulties that people have and the support that is available.
Rosemary Smyth, who has one prosthetic eye and a macular hole in the other, which has the same effect as age-related macular degeneration, talks about her personal experience of sight loss.
“I’m 71 now and this happened to me in my early 50s. I found it very difficult to cope. You realise that there are so many things you can no longer do and you feel very much alone. In the beginning my family were inclined to forget that I couldn’t see very much and it was difficult for them to understand. On the outside I looked the same and my eyes looked perfectly normal so it was hard for them to figure out what I could and couldn’t see. But time made it easier for us all,” explains Rosemary.
Sight loss obviously has a profound affect on the person themselves but it can also upset the entire family dynamic, as Caimin Fox, NCBI’s family therapist, explains.
“Sight loss can shatter somebody’s self image and sense of themselves. It can also change roles within a family or partnership. For example, someone who was working fulltime and providing for their family financially may suddenly find themselves at home full-time. This in itself can be a huge role change but if their partner, out of concern and a desire to help, is inclined to take over their various roles within the home, then it can leave the person feeling that they are no longer contributing to their family, and this can generate a sense of worthlessness. Meanwhile their partner may be unsure of what is expected of them or how best to support their partner.”
Rosemary says that the attitudes of friends and family can have a big impact on the person dealing with sight loss. “You notice a difference in how your family treats you and in how other people treat you. When I first registered as blind some people backed away when I had expected support. I was very surprised by the reactions of some people around me. I didn’t want them to take over but I did need support with certain things until I found out how to do things myself, which I did in time.”
Christine Maxwell, from Féach, a support group set up in 1994 for parents of children with vision impairments, says that it can take some people years to even be able to talk about sight loss in the family.
“We find that some parents want to talk at an early stage and find out all they can straight away but for others it can take four or five years before they get to the stage where they are ready to talk about it,” Christine explains.
Christine has first-hand experience of coming to terms with sight loss, as her son Luke has a vision impairment. “When my son Luke was diagnosed 23 years ago I was devastated. I was more devastated for me than I was for him at the time. I couldn’t understand why this happened to us. Luke was premature and in hospital for about 10 or 12 weeks. We were told about all the other medical complications but nobody ever mentioned his eyes. When I was sent to a specialist I went on my own, I didn’t realise what I was going to be told and there was no support offered whatsoever after the diagnosis. We were just sent on our way and there was no back up. It was a year or two before I could really talk about it. I had a lot of friends who had babies around the same time and I just kept asking ‘why our family’.”
Caimin has also found that people come to NCBI for counselling and support at different stages in their vision loss. “People who have a tendency to be proactive may to come to us sooner but others may wait until things get too much for them and they really need to talk to someone. Whatever stage the person is at in relation to their sight loss, I find that counselling tends to work best when the individual themselves recognises a need for it, rather than when someone tells them they need it.”
Although individuals attend NCBI’s family therapy service on their own, it is referred to as family therapy because it takes a systemic perspective, with Caimin looking at how the vision loss affects everyone involved – the individual, their spouse or partner and any children or siblings.
“My challenge is to connect with the person or family that comes through my door and to try to understand with them what their experience of sight loss is. Every individual’s and every family’s experience will be different. I try to explore and uncover the resources that already exist within the person themselves and within their relationships with family and friends, that may help the person to adjust to their sight loss and prevent it from dominating their lives. The best piece of advice I can give to families and friends is to listen to the individual who is experiencing sight loss. Don’t try to take over, or second guess what they need, ask them, and talk about it. Encourage the person to be as independent as they can be, based on their own situation.”
Encouraging independence is also something stressed by Christine Maxwell and Rosemary Smyth.
“It is very difficult to let your child go and have some independence but it is really important to tell them that they can do anything. Obviously you don’t want them to come to any harm but some parents can be over anxious and that passes on to the child. Our attitude was to let Luke try anything he wanted. He was the goalie on the hockey team for a while and my heart was in my mouth watching him but he was fine. We never told him he couldn’t do something if he wanted to try it. We (Féach) are taking a group of children skiing in Austria this weekend. It’s really character building and it’s great for the children to do things that other, so-called ‘normal’ children can do,” according to Christine.
Rosemary has found new interests following her sight loss. “I used to read avidly but I had to find books on tape and learn how to use them”.
Some people never get used to audio books because it is such a different experience to picking up a book and reading it yourself. I have found plenty of things that I enjoy but it takes perseverance and discipline.”
“I started painting on silk, which I really enjoy. I also started to play outdoor bowls and really surprised myself by being good at that! I have done a peer counselling course and learned to use computers through that and that has been fantastic as it allows me to keep in touch with friends from around the world. I have also done writing courses too. I understand how difficult it is for many older people to take up new things though and it is often even more difficult for people living in rural areas, as they find it hard to get around.”
Finding support
When someone is diagnosed with an eye condition the focus tends to be on the medical side of things and the treatment options that are available. However, if treatment is no longer an option, or the person’s level of vision has begun to affect their daily lives, it can be difficult to find out what support, either practical or emotional, is available.
“We have seen people who have been told by their ophthalmologist that they are going blind and there is nothing more that can be done for them from a medical point of view, but they are not given any more information and they don’t know where to go. They can feel very lost,” according to Caimin.
Féach
Féach was set up because of a lack of available peer support for parents of children with vision impairments, as Christine explains. “I think that talking to other parents in the same situation can benefit a family hugely. It’s nice to be able to bounce off another parent in a similar situation and find out if your child is meeting their milestones, or even to talk about medical issues without the jargon.”
“Often parents have no idea where to go. There is a lack of communication with and between service providers for children, such as in education for example, when really we should all be working together to make sure each child has what they need. We work very closely with NCBI’s community resource workers and they have been brilliant. Féach was set up as a support group but has since become a lobbying group as well and we have fought on different issues like education and also getting the companion free-travel pass for children.
MIST
Rosemary set up a support group for people with macular degeneration, called MIST, 11 years ago, having found it difficult to find people in a similar situation to herself to talk to.
“There was a group in the UK but there wasn’t anything offering peer support here at the time. People who join MIST are looking for support but also use it as a social outlet. People who are diagnosed with macular degeneration feel they are on their own, they don’t know that other people also have the same condition. It is good to realise that you are not alone and to find people who understand what you are going through. We offer peer support at the meetings and also try to introduce people living in the same area. A lot of great friendships have been made out of it,” according to Rosemary.
Contact details
NCBI’s family therapy service offers people an opportunity to talk with a professionally trained therapist about their sight loss, its impact on themselves, their families and their relationships, as well as their hopes and dreams for the future. The service is free and available in Dublin to individuals or families.
For more information contact Caimin Fox or speak to a community resource worker on 1850 33 43 53.
Féach meets once a month during the school term and parents are welcome to come along to those meetings. There is also a discussion forum on the website www.feach.ie. Contact Chairperson Christine Maxwell on 086 3640233 to find out more.
MIST meets in Dublin and Waterford once a month (bar July, August and December). For more information contact Rosemary Smyth on 01 2809895 or Kate Mahon (for Waterford group) on 051 857795.