better late than never!

[salamander160]

I have been disabled for nearly 50 years, I had encephalitis when I was 6 years old, it left me blind paraplegic (so I thought) and epileptic, I also have osteoporosis, empty sella syndrome among other things. A nurse in hospital questioned the paraplegic a couple of years ago, I started asking questions myself, I have always found it hard to fit in, get support not really knowing what my official diagnosis was. I knew there was brain damage and that my legs and lower back were effected, but never really knew what was actually wrong with me. I went to see my G.p yesterday, I had my medical notes sent over to me when I lived in France but when I returned to the Uk in 2015, my mother kept them with her over there. I asked her for them several times, she wouldn't send them over. I finally got them back and took them to my surgery, Dr Ross summarised them, I went to see her yesterday, she read through her summary, when she told me I have spastic diplegia, in other words have cerebral palsy, I was a bit surprised. I have often wondered what my actual diagnosis was but couldn't find out. I have struggled to fit into support groups, knowing may have made it easier for me. Why hasn't anybody ever discussed this with me? isn't it something I had a right to know about, I am a bit angry, upset, annoyed that this was kept from me all these years. I have a lot of health problems and this answers a lot of questions. My mother went through my notes in the past on more than one occasion and must have spotted the letter with the diagnosis, why didn't she tell me? I cannot blame my G.p.'s, I have moved around so many times over the years but knowing may have made things easier for me. Am I right to feel like this, resentful, etc, life has been a real struggle! I suppose knowing now is better late than never but I would have preferred to know a long time ago, it would have helped me to come to cope or manage my disabilities.

[Pairofboots]

Hi, I can understand why you might feel resentful. How might life have been different if you had known. Sliding doors, what might or might not have happened you will never know.

I'm not one for banging the positive, but what will feel resent gain you? We have to think what life was like 50 years ago. Even though it is in living history, 50 years ago disability wasn't discussed let alone understood. People were told 'this is how it is, go away and get on with it '. They were a whole different era.

I can remember many years ago finding out something about my health as a baby. At the time I was livid, all the things I would have done differently if only I had known. The case was, I wasn't told, I didn't know, when I found out I had lived more life, I couldn't change anything. If anything, it explained some of the behaviours and attitudes to things I had done. Would knowing changed anything? I'd like to think it would have, but due to the times, it was openly spoken about.

I hope this makes sense. 🍀

[salamander160 in reply to Pairofboots]

You are right but at the time when writing this, having had several deaths in the family this year and having constant infections and other health issues it was jst one thing too many. No I probably wouldn't have been able to do anything different, if anything I would have had a better idea of what I was dealing with, finding out answers to a lot of questions but my mother new, ok we don't speak but she would have known, she should have told me. As for my actual disabilities it wouldn't have changed anything, it is what it is, but I would have been able to search for support from different organisations if i had known. Oh well can't change it, get on with it.

[Pairofboots in reply to salamander160]

It is not a case of getting on with it. It is accepting it for what it is, another part of the jigsaw of life.

[skydivesurvivor]

accept and move on?! Life is too short to worry about what has happened, use it all as experience. Find new clubs, support from like minded people, good luck on this very trying journey, know we will be here should u feel the need.