The Emotional Side of Sight Loss
Sometimes it is the little things that make all the difference. Mrs F tells her story about the emotional effects of sight loss and how having the right care helped her find a way through it.
On being diagnosed with glaucoma:
“I was diagnosed with Glaucoma and it came as quite a surprise at first, then I started to notice the blurring in my vision, the glare and that, sometimes, I felt I wasn’t seeing the whole picture. I was treated at the hospital and even had a procedure to help reduce the pressure in my eyes permanently. This meant I should not lose any more peripheral vision. The hospital are good; they check my visual fields and pressures every six months, but they are so busy there I often feel it’s not the best time to ask questions, not in the depth I want to talk about them. They tell me I am doing well and give me an appointment to come back again in another six months. I am always grateful that they are helping to look after the health of my eyes in addition to my opticians."
On needing to feel looked after:
"I still felt like I needed more personal care though. I felt that it’s ok telling me my vision was stable, but I was not aware of the glaucoma starting in the first place there was no warning signs, no pain, just what was picked up in the eye exam. So how do I know if it’s changing between appointments? This is a scary thought to have. It’s one I will always have. What helps is knowing that I can talk to my opticians anytime I am concerned. Sometimes you need someone to tell you that it’s ok. I know I can have an eye examination as often as I like through the eyecare plan, just knowing that means I worry less than I did before, especially when waiting 12-24 months between eye exams felt like forever. I was always waiting for bad news, even though it didn’t always come."
Coping with the impact of glaucoma on everyday life:
"The problem with glaucoma is that, to other people, it’s not obvious; I can do everything I always did, it's less obvious things I have problems with. For example, sometimes I miss friends in the street if they are on the wrong side of me; I just can’t see them. I started to stop doing the things I loved, I stopped going out, afraid of people staring at me. I felt like I had a big sign saying, “She’s got funny eyes”. I felt daft tripping over things, or bumping into people if they were on the wrong side of me. It was embarrassing when people thought I was not waving back at them because I was being ignorant, even though I tried to explain I just did not see them. My vision, or the fear of losing more, as well as not knowing how to cope with what I had lost, was all consuming. I needed to fix it. I went to several different opticians each time hoping one would give me a magic solution, that one would solve my problems. I spent a fortune on new glasses after new glasses. I tried everything they offered. Different styles of lenses, different tints, different prescriptions, but still nothing improved."
How we can help:
"It wasn’t until I met the team at Ryley and Evans that I was actually told not to keep buying countless pairs of spectacles! But instead to have a cup of tea, and talk about why I was trying to get new glasses all the time. The dispensing optician talked to me about different ways to use my vision so that I could still do the things I loved. She gave me different things to try, and explained some would work for me, some might not. She was right in that she talked about how to use the walls and sides of the path to my advantage when going out and that really helped. She often called me up in the beginning to make sure I had left the house that week, setting me little tasks to do. In the meantime I was seeing my GP also to get the extra support I needed. Just knowing I could call someone who understood me helped me. After building my confidence with her, she explained that she felt it was the right time to have an eye examination. The eye examination was the most thorough I have ever had, everything was explained clearly; I felt I was given the time I needed to listen to the advice and ask questions. This time I felt changing my glasses was because I had a change in my prescription and I knew exactly what to expect from them and from my vision. This meant I was so happy with the spectacles when they arrived and could see the improvement on my previous pair. Previously I had only focused on the problems with my eyes. I was always upset when I received new ones that didn’t fix everything. The fact that Mr Glass took the time to explain the differences between my eyes, showing me each time where he could improve, I felt truly part of the experience and like, for once, I understood. It was a huge step towards understanding the limitations of my vision loss, so I could work with it better.
Happy with my spectacles, one thing plagued my thoughts; I felt alone in my vision journey; I had not met anyone with eyes like mine. I knew right away who to call for advice, I called Ryley and Evans. The dispensing optician said she would do everything she could to help. She called the glaucoma association, the Derbyshire sight support and Nottingham my sight. They offered me telephone support or groups, but none of that felt like something I was interested in. I didn’t want a self-help group; it wasn’t something I felt comfortable with. I felt bad as she had gone to a lot of trouble, but actually she was very understanding. She said she may know someone who had a different type of sight loss but who would be willing to meet with me and discuss their experiences. I was nervous but we arranged to meet for coffee. She took me on her day off to meet with her friend. He was such an inspiration, he had very little sight and he coped so well. He gave me a few technology tips which I thought were amazing. Mostly though I saw that he didn’t have a big label on his head if I was to pass him in the street I would not know! He inspired me to go back and start doing the things I love again."
Adapting to life with glaucoma:
"A year on and I have moved on so much with my life I am back going out meeting friends for lunches. I go out on my own again and my family say they have me back. I still have to do some things a little differently because of my sight. I have to remember I won’t have back what I once had but that I am in good safe hands with my eye care. I trust that I will be looked after well. I know I have the support and without that personal care and all those cups of tea I know I may not be where I am today. Sight loss is not just about the physical effects there is an emotional effect too. I am grateful that my opticians recognise that and see me as an individual to care about and not just another number through the door."