At last a diagnosis

I was about twenty-five when retinitis pigmentosa   was diagnosed and this was after going to see my GP and explaining that I would not leave the premises until he promised to send me to the hospital regarding my eyes. I knew that there had been some deterioration and that it was essential that I saw a specialist. After examining my eyes and asking questions, the GP agreed to make an appointment for me but made it clear that it was purely to appease me; I did not care whether he believed me or not as I was happy because I was finally going to the hospital. On my next visit to see the GP for the report from the hospital, the first thing that he did was to apologise and then told me what he knew about the eye disease which was not a lot. The doctor told me that I had an eye disease called retinitis pigmentosa and that there was no cure and would lead to blindness. This was the last thing that I expected to hear so I asked for a second opinion, I wanted a private consultation so that I could ask questions but, again it was confirmed that I had retinitis pigmentosa. Once again, I was told that there was no known cure or treatment available and that it would get worse but was told that I would always have some vision. Yes, I cried a lot but that was surely a natural thing to do in such circumstances and this was nothing to be ashamed of, at least it helped to get rid of some pent up emotions.

 The first thing that I did was to pack up driving, I was going to buy my father’s car, an Austen A40 but I knew now that this was not going to happen. It was the correct decision for I certainly did not want to be responsible for any fatal accident and I would not be able to drive the car at night anyway. Nowadays, I believe that to obtain a driving licence people with retinitis pigmentosa or any other eye condition should undergo more stringent tests before being allowed to drive on the public roads.

About six months later I was at an all-time   low, I was feeling exhausted, isolated and unwanted. I did not want well-meaning family members to over-protect me but what I did want most of all was someone to sit and talk to me about the eye disease. What do you do when you have been told that you are gradually losing your sight? I felt alone as I did not know of anyone who had this eye disease or who could tell me how to cope with it. Some friends disappeared because they felt inadequate and embarrassed because they did not know what to say to me.  I desperately needed some emotional support but I was not getting any, not even from my father and stepmother.

 Why did I feel so ill, it was fear and uncertainty about the future and with not getting any support from anyone, it became too difficult for me to cope with the feelings regarding a diagnosis of impending blindness which believe me, is a frightening thought especially when there is hearing loss too.  I realised that I had come to a point regarding the eye disease which was restricting me in some way in my everyday life and I realised that I had to make some important decisions such as deciding on what direction I wished to take. I tried to disregard the position that I was in but I was not able to and I was certain that it would be better for me to know what the future held for me rather than ignore it.  One thing was certain, I will eventually have to adjust to a new way of life because of failing sight but would it be that bad, as it was not possible to predict how much vision I would lose. There would be moments of frustration and annoyance with myself but I was confident that I would find the strength to cope. I remembered the advice the specialist in Sheffield gave me which was to accept that I have got a rare eye disease for which there is no known cure or treatment, take care of myself and have fun which was certainly good advice and she gave me hope by remarking that I will always have some vision though others had said that the eye disease could or would lead to blindness. It became important that I found the courage to accept and get to grips with the situation, be positive and have a strong attitude and faith in myself.  It was not the end of the world for I was sure that I could still keep going though maybe not as I have previously been doing and I was aware that I had to sort out any of my problems on my own. For a long time I had to try and put on a brave face, trying to show that I have not got a care in the world but deep down I was hurting.