I enjoy watching programmes that make a difference to people who need help having their homes adapted to fit their conditions and for whatever reason can’t do this for themselves. The programme also helps those who come into a diagnosis late, who struggle to be able to help themselves and help with adapting their homes to accommodate their symptoms.
Why I’m bringing this up is that no matter how late the diagnosis, there is still an element of guilt on our part that we have to live with, particularly as those we share our lives with must also come to terms with our condition, but primarily must come to terms with the symptoms that accompany our condition.
Where I do struggle to function normally in my life, my family will struggle also. There isn’t a day go by that I don’t feel guilty because I didn’t know what was wrong with me and now 8 years on since my diagnosis I’m still working through some of my symptoms. It’s not only me who has to deal with that.
How we get to deal with our symptoms may not tie in with the how the other person we share our life with might have seen their own life panning out. That’s a big ask. I needed to know so that my disability was out in the open at that time. It’s important others are given a choice. I feel bad that didn’t happen.
I am lucky that my brain damage as a baby was related only to a trauma during my birth. That my injury was self-contained. I am thankful for that. This isn’t something I have passed on to my children.
Sadly, others aren’t always so lucky that way, particularly if what they have is hereditary.