Dear Carrie:
First let me envelope you in a virtual hug! Your feelings are in my mind totally natural. I too can relate to feeling most comfortable when I feel in control of my life. Don't we all? It's a terrible burden to have to live without information because your husband is not capable of knowing it, as I imagine that he too fears that whatever mystery is lying in the answers he will find himself without the comfort and safety of feeling in control of the outcome. My God, no wonder you are both suffering and yet, it may be the absence of information that is making things more difficult.
Once a very long time ago, I was in a very frightening financial situation. I had lost my job, and I had the responsibility for providing for my kids and had no idea how I would manage it all. In any case, I was feeling terribly overwhelmed and I confided in my aunt. I was feeling helpless and overwhelmed but the advice she gave to me proved priceless. She said I had only to make a decision, to take action and once I did that things would begin to be restored in my life. She was right. I made the decision to move us from our large - and much loved - five bedroom home and for a few years we had to live in a basement apartment. I found a cute apartment and made do. Like my Mom, it is strength of mine, always being able to make the best of whatever we had. The point of the advice is that we may be in circumstances that we don't want to face, but crying about it and allowing ourselves to become immobilized only adds to the feelings of helplessness and lack of control. As soon as we make a decision, and accept that it may not be the best thing we were wishing for, we could handle it and it certainly beats feeling 100% lost and at a standstill.
If you can speak to the doctors about your need for information and your husband's reluctance to know it, you can make better decisions about how to proceed from here. The news you receive may not be as scary as you think, or if it is worse than what you are expecting to hear, at the very least you will know what to expect. The truth of your situation will not be made more difficult by knowing it, as we often magnify things lurking in the mysterious dark.
Your husband needs hope and so do you. It cannot be a comfort to either of you if it is based on false or wishful thinking. You will cultivate the courage to face whatever it is that you and your family must. I believe that with better information, even if you have to keep it to yourself for a time until your husband can be eased into being made aware of it himself, will help you. It must be incredibly hard to continue putting on a brave face while feeling like you're falling off the edge of the world as you once knew it. I'm so sorry you are going through all of this on your own. Please continue to write and ask for help and understanding. I am here as are we all just waiting to respond to your need. It is a privilege to connect with you Carrie! Keep hopeful in the presence of our virtual care. It is the real thing! Hugs from me to you, Carrie! x0
Cath1