We mourn the loss of our health the way we mourn other losses. For me, I went through the 5 stages of grief back in my teens, when I realized the daily pain was going to be a permanent part of my life. Then I went through them again at age 23, when I was diagnosed with an autoimmune condition for the first time. These were different kinds of losses. First I had to accept the current symptoms, then later I had to accept that things might get worse eventually.
About 10 years later, now I’m experiencing something new: hope for improvement.
At first, with the pain, there seemed to be no point in hoping for improvement. After the initial rounds of doctor appointments, tests, and surgery, it was clear nothing would change. I could accept that, because its effect on my life felt limited. Unpleasant, horrible, obscene, but limited. Later, with the autoimmune diagnosis, there still seemed to be no hope for improvement, and I foresaw a very difficult life ahead, but that was in the future and I was living in the present, so even though it was in a part of my mind, I tried not to focus on it. More recently, of course, my life was altered drastically, and I didn’t feel anymore like I was really living my life, but more like I was just trying to get through it. This is no way to live, but what choice did I have? And that’s where the hope came in.
Now I picture my future as being better than my present and that worries me. I worries me mostly because I have no idea if it will be true. I picture a better future in part because I have some medical reason to hope, because I am pursuing new treatments and so far they have helped a bit. But I also picture a better future because I refuse to picture a future like my present, or possibly even something worse. I picture a better future because it’s what I have to live for, and I need that ideal. But is it realistic? Is it even possible?
I am scared to hope. I am scared that I will get my hopes up and will then be crushed when I don’t improve. My dreams are simple: to go back to work, to date, to travel a bit, to maybe even have a family one day. But to anyone who has been ill like this, these dreams aren’t simple. They aren’t easy and they aren’t a given. Dreaming of these things could be a way of setting myself up for a huge disappointment.
How can I stop? I honestly don’t know. It isn’t as though I spend an hour daydreaming about what I’d do if I felt better; it’s much more subtle than that. I hear about an interesting job, and wonder if that’s something I might want to do when I go back to work… and then I remember that I don’t work. I remember a great trip I took and think about going back… and then remember that I can’t travel. I think about how much I should save up for my next car… and then remember that I have no income to save. I picture moving to a smaller apartment until I meet someone… and then remember that I’m not dating. It’s hard to shut off these automatic projections of the life that I always assumed I’d have. I suppose that in time, I’ll change my frames of reference, but I’m just not there yet. So should my goal be to stop dreaming? That’s a horrible goal. And yet…
So a part of me is continuing to hope, even while another part wants to run away from any sign of hope. And in the end, I just hope, desperately, that a little bit of what I’ve been dreaming of will come true.
Chronic Rants 
I completely agree with you. I don’t like the word hope anymore.