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Why 'Acceptance' Isn't Always the Final Step of Grieving Your Illness

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Three years ago, I was diagnosed with myalgic encephalomyelitis and  fibromyalgia. I was told it could not be treated, that I would have to learn how to live with the illness and its many symptoms. I then experienced something many others face after being diagnosed with a chronic illness — grief. I grieved the person I was, and the person I thought I was going to be.

Stage 1. Denial.
When my doctor explained that my illness would not be going away and that I was stuck with no treatment, I remained silent. Not because I was shocked, but because I knew she was wrong. There was no way this was it. Whatever I had could be cured. I wasn’t going to feel like this forever. I needed another opinion. Even after the next three doctors I visited agreed with her diagnoses, I still believed they were lying. They got lazy, they weren’t looking hard enough, this wasn’t it.

I spent the next four months researching different diseases, finding similarities with other illnesses, and writing notes to show to my doctors. I wanted more blood tests, more MRIs, something to prove that this wasn’t it. Something to show that I could be fixed. I wasn’t ready for the monster that is chronic illness. I wasn’t ready for my life to change.

Stage 2. Anger.
My anger hit fast and aggressively. It started out as anger towards this disease wreaking havoc on my body. How dare the universe do this to me. My whole life I’ve worked so hard to make everyone happy, to help others, to be compassionate, and this is what I get back. I was about to start college. I was going to pursue medical school; I was willing to dedicate my life to help others. How dare life do this to me?

Then it shifted, denial had lasted a good four months and now my friends were dropping like flies. No one understood what my illness entailed; they didn’t understand that I couldn’t schedule in advance because I didn’t know how severe my symptoms would be that day. They saw me as flaky and unreliable, so they left. How dare they? After all I had done for them, after how much of myself I gave to them. I was there at a drop of a hat to help any of them when they needed me, but the minute I needed them, they left me.

Stage 3. Bargaining.
Anger didn’t take over too long, but it did remain hidden through the year, popping up at the most inconvenient times. But, it was bargaining’s turn, and boy did I bargain. My illness began after I got the swine flu, so naturally, I played the “If Only” game. If only I had stayed inside during the flu outbreak. If only I had worn a mask in public places, I already knew I was prone to illness. If only I had sought more medical attention while I was sick. If only I was homeschooled, then I would have been less likely to be introduced to the virus. This game was tiring, two months into it and I had regretted almost every life decision I had ever made. I was ready to move on to the next stage.

Stage 4. Depression.
Spending almost a whole year riddled with pain and fatigue was starting to get to me. I lost who I used to be. I once was the captain of my volleyball team, a member of my high school’s student council. I was living for the future, and now I felt as if I didn’t have one. I was no longer able to exercise, some days I could barely bathe myself, and I began to pack on more and more weight. The depression consumed me. It wasn’t the feeling of sadness that was the most overwhelming, it was the feeling of complete hopelessness.

The day I was diagnosed my doctor told me that my disease, “wasn’t a death sentence, but a life sentence.” I was told only 5 percent of people with my disease go into remission. She told me I needed to learn how to live again with this new body, but as the months continued, I realized that maybe I didn’t want to live in this body anymore. This is when I sought therapy. I didn’t want to, but I realized my thoughts were becoming too powerful, and I needed to learn how to cope with this illness. With my therapist’s help, she led me into the last stage of grief.

Stage 5. Acceptance.
One day, a year later, I woke up and the fog of depression had cleared. I started learning what limits my body had and how to not push them farther than they could go. I wasn’t crashing as often anymore and I was getting into a new routine. I was learning to live this new life. I wasn’t the old me, and somehow that was OK. I was a new, stronger me, and I was proud of all that I was overcoming. I began seeing an infectious disease doctor that specialized in my illness and I gained new hope that maybe they would find a treatment within my lifetime. Things were going to be OK.

But here’s one secret you don’t often hear about the five stages of grief. After a whole year of going through this journey and finally reaching acceptance, a few months later I started the cycle of grief all over again.

Three years later, I’m still here, cycling in and out of these stages, sometimes in random order, always at different speeds.

I don’t know how long it will take me to reach acceptance and remain there, but I’m not really worried about it.

I’ve come to realize that I’m allowed to feel these emotions. My life did a 180-degree turn and my daily life has been overrun with illness; I would be worried if I wasn’t feeling all of these emotions.

It may take a whole lifetime, but that doesn’t matter. The only thing that matters is that I keep going, and I don’t plan on stopping any time soon.

Have you gone through the stages of grief multiple times? Let us know in the comments below.

Originally published: August 24, 2019
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