I never realized how much loss is involved in being sick
I wrote last month about the documentary Unrest. If you still haven't seen it, stop right now and go watch it on Netflix/Amazon/etc. Anyway, in the post about Unrest, I mentioned a cool podcast called In Sickness + In Health, particularly the episode in which Cara interviews my personal hero, Jennifer Brea. **PAUSE for a brief starstruck moment -- Jen Brea totally retweeted a picture of me at the #millionsmissing visibility action! So basically we're best friends now and she totally knows I exist**
In the interview with Jennifer Brea, she talks about the constant process of grief. She says after you become ill or finally get a diagnosis, you go through all the stages of grief (sometimes over and over in cycles). This, however, is not the end, because you find constant new things to grieve: "With a chronic illness, you are always moving in and out of grief... You adapt and accommodate to it, but then you see all your friends graduate, and you're not there, and that's another thing to grieve... you see your friends having children and you can't... things that you didn't know you should miss because you hadn't lost them yet."
I realized, when listening, how true this was for me. I often feel like I'm past a lot of the grief. Or at least have completely processed the denial phase. Fifteen years of being sick was enough time to accept that it's real, despite doctors telling me otherwise. All I needed was to hear that I was right, that I wasn't crazy. As soon as I got a diagnosis that made sense, I could tangibly feel the grief (and other emotions) leaving my body. But, like any loss, there are other aspects of grief that I soon had to face.
I sometimes avoid the other emotions, or at least try to pay as little attention to them as possible, without suppressing them. Hearing this podcast, though, reminded me that what I've been feeling really is grief, and the only way for me to get past it is to process through it. So, as I do, I went to my therapist with a list of things I needed to get over.
Here's where I'm at: I've already had to grieve loss of energy, loss of time, loss of social life, loss of productivity at work and at home, loss of fine motor control, loss of ability to paint at times, loss of ability to travel or eat most foods, loss of physical strength and stability, loss of feeling well, loss of the "me" I once was, and probably others that I can't remember. Oh yeah -- loss of cognitive functioning. All of these losses are fairly constant. I have, over the last couple of years, cycled through anger, bargaining (I love this stage -- maybe if I just live on matzah, maybe if I don't go out in the sun, maybe if I avoid social contact, maybe if I sleep all day...), and depression. All of these stages are becoming less powerful and less frequent. They still exist, however, and I'm learning to lean into them, accept them and feel them for their value. After all, a good cry can get rid of my symptoms for a good hour or two! I am able to live in the world of acceptance far more often than a year or two ago, and it feels wonderful.
Yet, it's not all the time, and it's just for those losses. Then the weather gets nice, I excitedly go out into the gorgeous sunshine, and remember how sick it makes me. Time to grieve the loss of feeling the sun on my skin, and the freedom of frolicking outdoors. My siblings have get-togethers far away and I can't travel to join them. My friends start having late-night game nights, and I grieve my inability to stay up late. My life is fairly stable at the moment, so there aren't many new big losses. I am sure that in the next few years there will be larger losses.
For now, there are random events that pop up that catch me in the gut out of nowhere. I can't hold my niece or nephews because my spine, shoulders, and elbows are weak and burning with pain. I don't have the energy to play "scarer" with my younger cousins. I can't stay up late enough to see my husband when he gets home from work. These are small losses, but they can feel enormous in the moment. I just hope, through therapy and self-acceptance, to welcome grief each time and let it play its role in my processing. And simply accepting my grief as legitimate has made quite the difference.