Invisible Illness Week

I have just been informed that it is Invisible Illness Week, a time to acknowledge that not all illnesses can be seen. I often forget that I have an illness. I was asked how my illness affects me, and my first thought was that it doesn't affect me at all, but on further reflection, I realize that it affects me a lot; it affects me every day that I stay home and don't have kids to take care of, and it affects me when I have the free time to go visit someone in the middle of the day. I've been happily married for 16 years, and I don't have a job, and we don't have kids. Since this has been my life, it seems absolutely normal to me, so I forget how abnormal it is for others. It is always awkward when someone asks me if I have kids. When I say "no", they try and sweetly reassure me by saying, "well . . . not yet." I haven't figured out how to graciously tell them that there will never be a "yet." Mr. M and I will always be just Mr. M and I . . . no little Ms. As my symptoms are more controlled, I see less of a need to explain the situation. Also, when so many of the college kids we work with will be gone in four years, I don't think explaining my invisible illness is the best way to spend my time. I can only live day to day, and enjoy what I can, knowing that it could all be gone tomorrow.

I guess that for me personally, the biggest struggle isn't physical or spiritual, but relational. When I was in my 20s, I didn't have to worry about whether or not I needed to tell friends about the disease, because I rarely went a week without a whole day of being homebound and unable to go out. Now, though, I struggle mightily with the question of whether I should let my friends know. There are pros and cons to it. I don't know how to bring it up without it looking like I'm asking for sympathy. I try to put myself in my friends' place, and I guess I'd want to know if my friend might start shaking and be unable to walk at some point in the day. I just don't know how I'd react if I was watching TV with a friend and she started shaking. I never had to think about that too much, but now, when I make new friends, it is a huge concern for me, and weighs heavily. I wish I had a public relations representative to handle it for me.