How have your friends and family reacted to it?
Family- Let me separate family into my immediate family- hubby and children- and my relatives.
My immediate family is saddened by my illness for the most part and wish that I will get some relief. Like me they are happy when I get a day, dare I say a week without high levels of pain. As young as the children are they try to do all they can to help and prevent my being in pain.
There are days, weeks, moments where they have had enough and lash out at the situation…..not necessarily me. I get frustrated myself and lash out so when they do I just see it for what it is and don’t take it personally.
My relatives are for the most part uninformed. they know the various effects of the illnesses, the types of surgeries I had but to be able to explain what exactly is going on……I don’t think most of them can.
This is in part because I have not taken the time to really explain everything to them and partly because they never asked. My socialization was never to talk out issues and really thrash out problems. I wasn’t raised to share the intimate details of my life with anyone. So although this is a practice I now keep in my immediate circle I don’t hold it against them…….That’s how they are. If I need them they will be there.
Friends- I have few. Initially, people didn’t believe me. Since the illnesses are both invisible and I look just great to those looking on; I would get remarks like “I didn’t know it was that bad” or “you really can’t handle pain though”.
Since I have started this journey I have lost a few good acquaintances, but the few friends I have are still here. For the most part, they are supportive but the frustration with my not participating in activities and not baring my soul all the time is seen.
I think though that they do the best they can with what they understand.
Whether family, relatives of friends though…..I have explained to those who asked and try wherever possible to be honest with those who continue to be there for me and show an interest.
In any case it isn’t easy on the outside looking in……………neither is it easy on the inside looking out.