"The counsellor helped me to contain the feelings of fear, anxiety, despair and helplessness I was experiencing"

Posted: Tuesday 23 April 2019 at 08:33

"It is normal to experience powerful feelings after diagnosis and subsequent losses and changes. These deserve time, attention and thinking about. When we give our feelings space and time, the intensity lessens and we can get on with the business of living with macular disease."

Norma contacted the Macular Society's Counselling Service after feeling a profound sense of loss when she was diagnosed with macular disease. She has reflected on the process and how much she has mourned, but also what she has found. 

"I am 71 years old and have wet macular degeneration in both eyes. As many people have described the onset can be quite sudden. I had just had an eye test, ordered new glasses the week previously and by the time I collected my new glasses I was aware something was terribly wrong with my vision. My optician instructed me to go to A&E at the eye hospital as soon as possible.  The diagnosis and its implications were shocking. The second eye showed symptoms three months later, and I was prescribed injections in both eyes, five weekly for the left eye and ten for the right eye.  

"The biggest loss at the time for me was the way the disease affected how I read and especially reading music. 

"There have been ups and downs in the past two years but the main thing that urged me to seek counselling was that I had a lot of pain after injections.  It was excrutiating and it seemed we'd found a solution and my consultant was very supportive. For nine months things were fine but just before Christmas I had another very painful injection. I was devastated.

"Whereas previously I had not found the injections particularly difficult, I now dreaded them. I became preoccupied with thinking about the pain. I couldn’t stop thinking about it, ruminating, obsessing, talking to everyone and anyone.  I was totally preoccupied by the whole situation. I realised I needed help.  This whole process was taking up too much of my mind.  I am a healthy, active, lively person and I did not like this further loss of myself and the impact on my daily life.

"I was paired with a counsellor very quickly. I told her my story and cried, talking about the shock and impact on my life.  The adjustments I have had to make and allowances I have to factor in every time I go for an injection.

"For the first few sessions I focussed on my fear of having excruiating pain in both eyes at the same time.  How helpless and dependent I would be.  I have a loving and supportive husband and family, and friends, but I was used to being the one who helps, not the one who asks for or receives help.

"Over six sessions I felt heard and understood by my counsellor.  She held me during the time we had on the telephone and helped me to contain the feelings of fear, anxiety, despair, helplessness and lack of control I was experiencing.  I had two injections during this time and because of a slight change in my injection regime I did not have any more pain after injections.  But I had, with the help of my counsellor, prepared myself for what if. Before leaving for the injection clinic I had set my bedroom up with a radio, mindfulness meditation CDs and a comfortable back rest so that I could sleep upright.  

"Ironically I felt more in control.

"Counselling has been a very positive experience for me.  I have got the injections and the pain into more perspective.  There is no choice, if I don’t have the injections I will lose my vision very quickly.  I am very grateful to have regular injections which are working for me.  Our NHS is wonderful.

"I have expressed all of my concerns and distress in a safe, contained way.  I have my mind back, I am no longer so preoccupied and can get on without constantly being drawn back into the anxiety of my next injection date.  By having a regular time each week to talk I felt freer and more able to get on with things.

"My counsellor was a very sympathetic, warm, lovely person.  Most importantly she was a very professional and skilful counsellor. So, thank you Macular Society for providing such a wonderful and much-needed service.  I would recommend it to anyone who is struggling with the diagnosis, implications and impact of a diagnosis and treatment for this condition."

Our team of professional, accredited counsellors are available for free, confidential telephone sessions for anyone with macular disease or their family, in the UK or internationally. 

For more information, please call the Advice and Information Service on 0300 3030 111 or email help@macularsociety.org

Injections for macular disease shouldn't be painful. The reason some people experience severe pain afterwards is because they are allergic to the iodine. If you experience severe pain after injections ask your specialist if they can use chlorhexidine instead. A drop of Betadine will still be used in the exact point the injection will be given. Saline will be used to wash the eye after the injection. Read more about pain after injections in our factsheet.