There are allegedly five stages of grief, and many of them are applicable to living with chronic illness, but it is more of a ongoing cycle than stages you work through. Perhaps the same is true of grieving.
The very first stage is denial. After I almost lost my life to sepsis, I felt pretty awful, but assumed that I would bounce back to my usual highly energetic self. I returned to work too soon, because I thought that if I could start living my life normally again, that it would it return back to normal. I even had an ER physician who I worked with, tell me how serious my illness had been, and that it might take up to six months for me to feel better so I needed to be ok with not being ok. Six months sounded terrible then, and I left frustrated and in tears, because I just wanted my life back.
I waited those six months. I continued to work even though I frequently felt dizzy, delirious, unstable walking, constantly tired, and much of my life seemed like a blur. I couldn’t remember important things the day after, and of course my academic life began to suffer because my brain constantly felt like it was in a fog. Reading and writing for long periods became extremely difficult.
After the six months passed, and I still had not recovered, the panic set in. I began seeing dozens of doctors in attempt to figure out what was wrong with me. I saw primary care doctors, neurologists, an ENT, an ophthalmologist, and continued to seek the advice from the ER Dr’s that I still worked with occasionally. Working at the ER as a registration clerk had been one of my favorite jobs until I got sick. Afterwards I panicked every time I was scheduled there, because I was no longer my calm collected self that accomplished things quickly with a smile. Stressful situations that I use to thrive now caused mental meltdowns for me.
I went into an intense research mode. I was determined to do whatever it took to get well. I racked up doctors bills, read all the info I could get my hands on, was constantly poked and prodded with lab needles, and other instruments, and even had an invasive procedure the lumbar puncture which did permanent damage to my back.
Then I get angry. This is an unfortunate time for anyone to be around me because almost everything makes me angry. I’m angry that I’m sick. I’m angry that I don’t feel like I’m in control of my life. I get angry with the people who care most about me in life. The same people ask how I’m doing, knowing that I’m not ok. The sentiment is kind, but it ends up being a constant reminder that I’m not ok. Then there are also the well meaning people that want to help you. They give me anecdotal evidence, and I’ve received dozens of books, all of which would make me better if I would just take the time to read it. The worst is the woo that I’m offered. I’m a skeptic and don’t appreciate quackery, and it is constantly slung at me. I’m angry that I have to constantly put my life on hold for some unknown. I only have enough energy to perform one or two of what I now think of as high energy tasks like doing the dishes, or just showing up to one class if I’m in school. I have to be thoughtful each day about what I choose to do. I sometimes go over my limit, and every time I do it means taking away energy for future days. If I want to something that is high cost energy wise, I do it knowing that I will have to assume bed rest for the next several days. Just getting me to get out of my apartment costs a lot of energy. Going out with my friend costs quite a lot of energy, and that makes me angry, because I’m very social person. I get angry with the people who only check in with me when they’re not well, because they currently “understand” what my life must be like, except that they have hope for getting better so they don’t really understand. I lash out at the people most dear to me, and they put up with it even when they shouldn’t. Warning to those I love, I’m currently in the anger part of the cycle.
Bargaining is the next step for grief, and I do find myself blaming myself for this. Constantly reliving the week before I got sick and wishing I could take it back, but I really don’t have anything to bargain with. What really happens next in my cycle is apathy. My entire life is affected by my health, and when I’m in research mode it is the center of everything, but I get tired of it defining me, so sometimes I refuse to let my life be about my health anymore. I refuse to make Dr appointments, dismiss books and info people send my way because I don’t want to think about it. I am less likely to answer a phone call, or listen to music because I don’t want anyone or anything reminding me I’m sick. This can certainly be self destructive because I am less careful with my time and energy. I feel small victories when I do things I know I shouldn’t like going out for a night and drinking. I still pay the consequences, but I’m apathetic to them.
Apathy leads to depression. I can’t stop crying, and I want to hide away from the world. I isolate myself which only makes the depression worse. These are the times I fight the hardest to quiet the suicidal thoughts in my head. I quiet them by thinking of all the wonderful people that care about me, and the beautiful faces of my nieces and nephew, and how I don’t want to miss out on their lives, even if I am completely miserable.
Acceptance. This is a recent addition this year to my cycle that I’ve been experiencing for four plus years. I have to accept that I can’t do most of the things I wanted to with my life. I have to make more realistic goals. I wanted a PHD, but have now resigned myself to just trying to get a BA. Having grandiose ideas and ambitions seem unrealistic to me now. My dreams have to get smaller. I’m sure many well meaning people would tell me not to give up on my dreams, but if I don’t let go of them, I actually get more depressed knowing how far out of my reach they really are now. I have to live with what I’ve been given. I try to enjoy the time I have with friends and family and live one day at a time.
I wish it ended with acceptance, but it’s hard to get over losing your health, so the cycle will begin again with research mode. Inevitably I will get frustrated and move onto the next stage of the cycle. Hopefully someday I can cut the cycle down to just research and acceptance, but I’m not ready for that yet. I’m sure other people have had similar experiences, and I’m sure it varies from person to person. For me every day is a struggle, and will continue to be unless someone can actually find a way of treating this, until then the cycle will continue.