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How the Cycles of Your Illness Can Keep You in Stages of Grief

When researching lupus for something I was writing a few weeks ago, I discovered that chronic illness and lupus tend to cycle in three stages:

1. The Flare Phase

Where symptoms are serious, and need medical attention.

2. The Chronic Phase

Where symptoms have subsided, but are still pressing.

3. The Remissive Phase

Where you feel better, the symptoms subside, and you can return to normal activities. This will last for some time. You may even forget you are “sick,” until the cycle begins again.

I should start by saying that I have been in a remissive phase for several weeks, maybe even months now. Perhaps two months.

Recall: “You can return to normal activities. This will last for some time, you may even forget that you are “sick” – until the cycle begins again.”

A few weeks ago, the cycle started again for me – the hair loss, the fatigue, and I tried to ignore it. Then the pain began, waking up at night in pain, from anywhere between 2 and 4 a.m. I tried to ignore it. After all, who wants to pay attention to something like that and acknowledge that they are sick? It’s especially hard after a great stretch of happy pain-free time to acknowledge that:

1. They have a chronic illness.

2. It’s back in action.

This is where the cycle of illness becomes important.

It has been my experience that though I went through the stages of grief when I was diagnosed with my illness, it is a constant cycle that puts me back at square one of grief every time I cycle through it. Every time I cycle through these stages of illness, I go through the stages of grief for my illness again – sometimes to a lesser degree than before, sometimes worse.

These last few weeks, feeling sick and facing a flare again, I have found myself mourning and coping with the fact that I have lupus all over again. At night when I wake up in pain, I don’t just cry because my hands and knees hurt, because I can’t reach my cane, or stand up to finish my makeup, etc., I cry because sometimes I don’t know if I can keep going like this. I don’t know how I will wake up to this every day. This is grief that you face when you are first diagnosed.

This was something I thought I had already faced, but each time I get well and am in the “remissive” phase, I forget about it. When I am well, I allow myself to believe that I’ll be fine forever. Does this happen to anyone else?

Then, eventually, as it always does, the flare stage returns, and I am faced all over again with the anger, the denial, and the grief. And, once again, having to accept my reality.

And then it happens again.

These are the stages of grief, according to Elizabeth Kubler Ross:

1. Denial (Flare period.)
2. Anger (Flare period.)
3. Depression (Chronic period.)
4. Bargaining (Chronic and/or flare period.)
5. Acceptance (Chronic Period, transitioning into remissive phase.)

This will be different for everyone, but by the time I reach acceptance with the illness all over again, my body is finally returning to a remissive period.

It is my belief that chronic illness cycle is mapped on to the stages of grief, which can help you accept your illness and live well with the ebbs and flows of how you will face it.

In a flare, I am awake at 2 a.m. or 4 a.m., in pain. I’m also upset that I have to face this again when I thought that I had put sickness behind me. This is not about being sick so much as it is about accepting my situation, permanently – which, chronic illness by definition makes impossible. Chronic illness means living in a state of limbo – so much so that one’s whole life is lived in spurts, which will allow you to excel or make gains.

In my chronic illness journey, I am discovering that though being sick in and of itself is frustrating, it is the cycle of illness (the flare, chronic and remissive phases) that are even more so.

They force me to phase the difficulties of my life each time I go through them, and to relive the grief I first felt when I got sick. Unlike an illness where there is a beginning and an end, chronic illness has a beginning, middle, end, and then it starts all over again, like a merry go round. How can your grief ever really end, or any progress be made, if you never really get off?

My knees hurt right now. It is almost Christmas time. My birthday is in a week or so. Things are not easy right now, and I wish desperately that things were different. I wish I could return to the land of “remissive phase.” I thought that when I was in that phase that I had gotten off the carousel.

None of this information is helpful, though, if we don’t learn how to apply it to make future flare cycles easier on ourselves. Maybe grieving chronic illness never really ends, but knowing that and warning yourself to be kinder to yourself emotionally because it will bring up grief, may help the process.

Self-care is important – not just physically, but emotionally too. Now I will be less aloof about flares and about the possibility of them, not just physically, but also emotionally. I am cognizant that I will cope, not just with what my body faces, but with what it brings up for me emotionally.

I feel like grief is like peeling back an onion. It comes in layers, and the more I learn about my own process with illness, the more I feel this to be true.

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Gettyimage by: JochenSchoenfeld