I really agree Mary Poppins. I hope to share more on this thread too as I hopefully find the energy in the future. It's amazes me how much relationship issues around this illness affect me more I think than the actual sickness itself in many ways. I think acknowledgment, validation, and understanding from friends and family seems so important to me for some reason and the lack of it, which seems to be a very common response, can be so hard to deal with. Somehow I am able to accept the reality, limitations, uncertainties, and losses of the illness in a way that I haven't been able to accept the lack of understanding, interest, and acknowledgment about it from people in my life. I guess partly because the illness is something that feels to me to not be in my or other human beings' control while people's reactions is in their control. Not being able to understand why people respond that way has made it all the harder for me. The only thing that is of some comfort in this area is that the fact that others experience this too leads me to feel less blame on myself for the way those in my life respond as I can see it's a fairly common response with these types of chronic illnesses and probably not unique to my relationships or about my behavior.
