My partner has asked me to write him a letter about how I am feeling since being diagnosed with psa,to help him under stand where I’m at,I’m at a loss where to start to explain what this disease has taken from me.If you were asked to try make someone understand what it’s like to have this illness what would you say? Appreciate all thoughts
That's good, that he wants to try and understand more. I would have a hard time doing this. My thoughts have shifted drastically since I was diagnosed 6 years ago. I had a lot more fear then. I'm definitely somewhat more relaxed about it now, but still sad about some of my losses. What you say will vary so much as to where you are on your own personal journey.
I agree Stoney. I am no where near where I was when diagnosed. I do remember apologizing to my husband after I was diagnosed as I felt badly; he hadn't signed up for this. He has reassured me that as we age we will both face health problems, mine just happened to be first. I have taken my husband to some of my appointments, MRIs and even too procedures though I am more careful when it is a very painful procedure. I try to keep him in the waiting room for those as the anguish on his face is too hard. I think I would have to write an outline: what is hard, what is sweet, how to help me, how not to help me and would try to balance the bitter with the sweet for him if I were writing the letter. I would also let him know that one of the hardest parts of this disease is it's unpredictableness. But that is me. Good luck with it.
IpThis is a good place to start:
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
In fact the whole site is good stuff.