Mental Health Awareness Week 2022: loneliness after sight loss

by Ali Bates, SSW Tech Advisor


It’s Mental Health Awareness week and the theme this year is loneliness. Loneliness is something that one in four of us suffer with at some point in our life. Today I will share my own experience of dealing with loneliness after sight loss.

Six years ago I suffered a detached retina. It was completely unexpected. I woke up one day with slightly blurry vision in my right eye and didn’t really pay it any attention as my eyes would occasionally go blurry and correct themselves later in the day. On this occasion it did not fix itself and I ignored it. I happened to have a routine optician appointment booked in and it was during this that I got told my retina had detached and I should visit the eye clinic.  Me being me, I left it a few days…  I worked at the hospital at the time so I just called the eye clinic on my next shift.  They demanded I came in to them immediately.

I had not expected that what was going on with my eye was an emergency that required urgent surgery. Unfortunately for me, the surgery was not a success. I woke up from the anaesthetic in complete darkness and excruciating pain. Nobody told me but I knew immediately that it had not been a success. The reality of sight loss had not previously occurred to me,

As part of my recovery I had to learn to sleep on my front and lay facedown for 80% of the day in order to give any chance to have some useable sight.

I existed like this for six weeks, in darkness and constant pain. My husband became my carer; he fed, bathed, did hourly eye drops and did everything in the house including looking after both of our children as well as me. For both of us it was incredibly lonely. I was bored, I wanted to read the news, see a friend and just feel normal and not like I was a burden on my husband.

One Saturday, a few weeks in, everything came to a head. I had only left the house for hospital appointments. My husband was physically and mentally exhausted from doing everything and dealing with the shock and uncertainty of my sight loss and inability to do anything. It was like the mental load had physically paralyzed him. We knew we needed some help from outside our four walls but this was not something either of us had ever sought before.

Monday morning my husband called the GP. He asked for help, he broke down, he felt like he had somehow failed as a husband. But, as I type this, I am literally sat here with tears in my eyes because I am so proud of him for recognising he needed some help. It was not failure; it was acceptance that he is human and there is only so much we can deal with on our own. During our entire relationship, every hurdle we have faced we have got through together, but he was so busy being everything to everyone else that he had nothing left for himself. Something had to give.

He had counselling; he was able to talk openly with someone that could help him adjust to our new normal, give him coping strategies and help him feel less alone. He felt able to tell me how he was feeling without feeling guilty, as the reality is that we both lost a lot more than an eye.  It changed who we are and the dynamic of our relationship. It was a long recovery but as I adjusted to living without my right eye I was able to be his supportive and fun wife again.

My own mental health recovery took a lot longer. I was so determined to get back to normal and back to work, that I did not stop still and give myself time to make adjustments; I threw myself into everything. I was in denial and angry at the same time. Everyone around me was so busy telling me that I am so brave and what an inspiration I am, which only confused me further as some days my only achievement was getting out of the house to get the kids to school.  I would then go home and sit in my house alone, hiding from the real world so no one could see how not ok I was. The short periods of time I was with others I could put my mask on and pretend all was ok.

It was actually our mortgage falling through nearly three years later that finally broke me, us buying our first home had been a focus for so long and at the last moment it was taken away from us. This rekindled my feelings of life being unfair and I went into a tailspin. All my focus went on finding us somewhere new to live and, thankfully, it only took 11 days to find somewhere and get moved in. But then I had a full breakdown. I could not hide from my feelings anymore. I didn’t want to take pills to numb the pain; I NEEDED to deal with everything so now it was my turn to reach out and ask a professional for help. I was lucky to be given a counsellor very quickly.

This lady changed my life. I worked through so much of the trauma I had been living with, accepted that I can still be me even with sight loss and, most importantly, I started to talk openly and honestly. It was not an overnight fix; it has been a long road of acceptance. I still have days of negative feelings but they do not control how I live my life or fill me with feelings of inadequacy. I definitely have many more positive interactions. I will always have a small amount of denial that I am blind but I know that is my stubbornness and determination to live my life on my terms.

I am sharing this as I know being open and honest with my experience may make others feel that they can ask for help. Here at Sight Support Worthing we are passionate about offering our members and their families the support they need. One of our future plans is to offer specialist talking therapy for those living with sight loss as well as their immediate family.

We are putting in a bid to the National Lottery to help fund this vital service. As part of the process we would like feedback from our community. Those of you on our mailing list (email and post) will have had a copy of the survey already. For those of you who have yet to complete it, you can find it here. It should take 3-5 minutes of your time and your feedback will be extremely valued. Thank you.