Janet Cairns, aged 62, from Portadown in Northern Ireland, was diagnosed with wet age-related macular degeneration in September 2021, a condition which can cause rapid deterioration in central vision.
Janet sought support from the Need To Talk project. Funded through the European Union’s INTERREG VA Programme, the project is providing a cross-border counselling service and confidence building programme for people affected by sight loss throughout Northern Ireland, the border counties of Ireland and Western Scotland (Ayrshire & Arran and Highlands & Islands).
Below, Janet shares her very personal story of the difficulties she faced prior to her involvement in the project, how she came to access its services and just how it transformed her life.
I had already lost most of the sight in one eye 30 years ago due to bad laser treatment. So when I started to notice deterioration in my better eye it was very concerning!
I started noticing things were blurrier around May/June time.
I couldn’t read the clock, I kept overfilling my teacup and missing bits when cleaning, but it was in July, when we went on a family holiday and I couldn’t see where my grandchildren were in the water (unless they were wearing really bright neon t-shirts) that I realised I really needed to get this seen to.
I reported my sight to my consultant in September and started getting injections to help my eyesight shortly afterwards.
By then, I was struggling to make myself food, burning things as I couldn’t tell the colour. I struggled to tell who was who from a short distance and see details on my grandchildren’s faces, including my little grandson who was only a year and a half at the time. It was very distressing.
All the little daily struggles were building up and I had more and more questions, like ‘how was I even going to tell my clothes apart to get dressed each day,’ or ‘what if I can’t see the faces of my children and grandchildren as they grow up?’
I was in a dark place, crying when I went into the hospital. Every time I tried going into a shop to get some groceries I felt people would get frustrated and push past as I was trying to distinguish dates on food, or find what I was looking for.
I got to the stage where I wasn’t going out, didn’t want to see anybody, just sat with the TV on all day.
All the little things had built up to the point that I just felt I didn’t want to do this, for my life to be like this and was finding it hard to cope.
Thankfully, my consultant referred me to one of RNIB’s Eye Clinic Liaison Officers who told me about the counselling available through the Need to Talk project.
Through the eight weekly phone sessions with one of RNIB’s trained counsellors I was able to talk about how I was feeling, all my worries and concerns.
It was a relief to share all that with someone who had such patience and understanding. You can be totally honest with them, where you maybe don’t want to worry a friend or family member.
The biggest difference in my confidence and outlook came when I did the Living Well with Sight Loss course.
I was very nervous about joining the group calls. I wasn’t sure I was ready and still very much in denial that I ‘had a sight problem’, but Richard, the course coordinator, was so lovely and understanding and took his time to explain what all to expect, that I didn’t have to speak but could listen in. He also helped me with getting set up with my computer and getting logged on.
Others on the call had lost their sight quite a while ago, but that was really good because they were able to share their experiences and tips and I was able to see how life could be, even if my sight didn’t improve again.
There were people talking about how they were running and swimming and doing all these other things that made me realise that life doesn’t end if you lose your sight.
I learnt so much about how to make the best of computers, turn the audio description on (on my TV) and where to get magnifiers and gadgets available to help (like the liquid level indicator for making tea).
Every week was more and more interesting.
I realised it was me that was stopping me living life, it wasn’t my sight loss.
I’m so glad I did do the course. I got so much out of it and actually didn’t want it to end. It gave me an opportunity to talk about my struggles in coming to terms with my vision loss and built my confidence in joining other online meetings. I don’t feel as alone in this now.
Since attending the course, thanks to the injections, my sight has improved significantly, but the course and others on it gave me the confidence and push I needed to start to prepare things like getting my husband more involved in the finances and learning how to do things in different ways myself, or who to reach out to if my sight does deteriorate again.
I’m looking forward to keeping in touch with others from the course and attending a local meet up in my area in March.
For someone who is perhaps in the same situation I was in last year, struggling and concerned, even terrified about what the future might hold, I’d say – get onto RNIB and speak to someone. They’re very good and patient. Don’t be afraid, this is not the end of life because your eyesight’s going. And do, do one of the courses! Just jump in, take a deep breath and just listen. Once you learn all about the support and help out there, you’ll feel so much better and realise more is possible than you could ever imagine.
Need To Talk’s Living Well with Sight Loss course takes the form of a four-week group online video course. Each weekly session covers practical advice, information and guidance on organisations, products and services that are available to help anyone who has experienced sight loss. Participants also have the chance to learn from each other’s personal experiences and share top tips.