My wife has been amazing throughout this 9-year ordeal with CIDP. She slept on the floor next to me in the hospital for two months, and helps me at home a lot.
We are both professors in our 60s at a university and have seen our share of bad behavior, which influences both of us in some of the decisions I have had to make and her response. Except for two months in hospital and another at home, I have continued to drive to school and teach. Since last spring, however, I have had such pain that I had to re-schedule music lessons. I have also had to leave before the end of the class that I teach. I keep the administration up to date on what is going on, and have been allowed a few accommodations, allowing me to do my creative work and research at home.
My wife has the strong opinion that I should keep the school and my students as much in the dark as possible. She feels that some people would see me as weak and ineffectual. Fortunately, I have built a decent career that has given me a high stature in my field, and I am now attracting some very good students from across the country and abroad. In my small professional field, it seems as if everybody knows about my illness and limitations. Whenever my students attend national and international conferences, my old friends sometimes ask about me and ask my students to say hi.
I cancelled two complete teaching days, and had to leave class early 2 or 3 times recently. Today, I cancelled my third teaching day this semester. My wife didn't hassle me about it, but later in the day she made comments that seemed rooted in her disbelief that my pain is bad enough to stay home from school. It has been a wrenching decision to make, and I carry loads of remorse for weeks and months. Without saying so explicitly, she speaks as if she disapproves of this, and seems to wonder if the pain is really as bad as I say it is. Needless to say, this adds greatly to my sense of failure, guilt, and overall sadness and regret of what my life has become.
All I want is for her to accept that my pain is severe enough for me to cancel teaching days. It would mean so much to me if she acted as if she supports me in decisions like this, instead of questioning or challenging me.
Not sure if I'm asking a question, or just getting this out there.