When diagnosed with a chronic illness, we go through stages of grieving. With autoimmune disease and chronic pain, it can be even more complicated because many times symptoms present and pain persists without the fairness of a confirmed diagnosis. All we know is that our lives have changed drastically, and that change trickles down to the lives of our loved ones. Life feels very unfair.
These stages of grieving compare with the model of grieving by Elizabeth Kubler-Ross. She lists the 5 Stages of Grieving in a particular order that our brain and heart go through when we experience a profound loss. The five stages of grieving are: Denial, Anger, Bargaining, Depression and finally Acceptance. Others have placed depression prior to bargaining. But either way, all of the 5 stages are passed through before leading to acceptance.
The first stage is Denial. “This can’t be happening to me. The doctor must have made a mistake. It has to be something that will go away in a short time and I will feel better. There is no way that I am going to feel like this forever, or worse, get even more unwell. This isn’t happening.” So we simply deny that we are ill. We attempt a difficult fitness class. We stay up late, thinking that just a cup of coffee or two in the morning will cure our fatigue. We take on major stress at work thinking that it won’t cause harm. But is does cause harm and we pay for it. We pay dearly. We sabotage our health and don’t listen to what our bodies are telling us that they need.
The second stage is Anger. “How dare my body betray me like this! Why didn’t my doctor pay better attention to my symptoms earlier? Why did this have to happen to me? I am so angry!” In the stage of anger, we may get jealous when we see our friends going to the fitness class we used to all go together. We may get angry when we look in the mirror and see a rash on our face that makes us look different and feel ugly. “Look at all my friends at the beach, having weekends away, going on active vacations. They go to lunch while I wait at the doctor’s offices. They all get to go shopping while I pay for expensive prescriptions. They go to strength classes while I can barely make it to restorative yoga every other day because my body gets too fatigued from trying to work out daily.” Sometimes I get so angry with myself, and although it makes no sense, I punish myself by staying up late or doing too rigorous exercise. Then I get sick. I became very cranky and irritable with my husband when I was sick and getting sicker and no doctor took me seriously. I yelled at my own husband because he was a doctor and he couldn’t figure it out, and so I took a lot of my own anger out on him. I sabotaged my relationship with my spouse when I was feeling angry. Luckily, he was patient enough and empathetic enough to know how angry I was at my illness, not at him. He waited it out with love and patience until it passed.
The third stage is Bargaining. Bargaining was an expensive stage for my husband and I. When “traditional” medication didn’t work the way I was hoping, I turned to alternative treatments. I bargained with God that I would change my lifestyle and that would make me better. I went to an extremely expensive nutritionist who charged by the hour and kept me there for 5 hours at a time going over my complete history from birth. She prescribed hundreds of dollars in supplements and overhauled my diet until it was unrecognizable. She insisted on long follow up visits and when I wasn’t getting better, she always “found” some new and expensive supplement to add to what I was taking. I was up to about 50 pills a day and probably $50 a day in supplements alone. My poor husband (poor in listening to me go on and on about the magic these herbs would provide, and poor in the bank by now) waited it out. I went to bed early, I drank warm water, I examined my stool and did anything to get better. I thought if I did what I was told, it would magically work. Thousands of dollars and several months later I realized my bargaining wasn’t working. I had believed in the bargain so much that when it failed, I became depressed.
The fourth stage is Depression. Ah, depression. I could barely get up and move in the morning. I could barely wait to go to bed at night. Junky TV became my best friend. Whatever it took to take me out of my reality. I couldn’t find anything to look forward to. I put on a smile around my kids, but I cried in the shower. I was stuck feeling sick and felt it would never end. Some days I longed to just sleep forever because in my dreams I was lively, and I wasn’t in pain, and I wasn’t sad. My depression is in remission now, but it is always in the back of my mind (far left corner 🙂 ). It does come back during stressful times in my life when I have a lot to do in raising three children. I watch other parents at school around me happy, excited and busy, while I am groggy, sore and trying to look busy while I really just want to sit down with a cozy sweater draped around me and drink a hot coffee. This is when my psychiatrist and therapist keep a close eye on me and see me more often. Depression is by far the hardest stage for me. When I cannot gather the strength to reach out for help, my dear husband calls them for me to make sure I get support both in medication and in talk therapy. It keeps me afloat during those times.
The fifth stage is Acceptance. More than any other times in the past 20 years, I am there, in acceptance. If you have read my earlier posts, you will know that my symptoms began back in 1994 and I got my first diagnosis of Dermatomyositis in 2009. So I was in complete limbo for 15 years. Then I still had a myriad of other symptoms that didn’t fit Dermatomyositis so I turned back to anger and depression. But my husband, who felt strongly that there was something else there that just hadn’t been discovered yet, did not let me give up. He researched and found the best Rheumatologist for me. She does a tremendous amount of research, she spends an enormous amount of time with me, and she validates my symptoms and my feelings. The first time I saw her she told me, “I don’t know exactly what you have yet, but I do know that you have an autoimmune disease, your symptoms are real, and I will work with you so that we figure it out and get you a diagnosis.” I left in tears that day. Not tears of depression and let down, but tears of relief. She was true to her word. She ran a gamut of tests that no one had run before. She also had me log all of my symptoms and when they occurred, and she discovered that in addition to Dermatomyositis, possibly thyroiditis and more recently she added Sjogren’s and small fiber neuropathy to the list. A diagnosis with a name, or many names, has played a huge role in me reaching acceptance.
I know that over the past years I went through the 5 stages of grieving. But with my illness and long term situation, it was not linear. I didn’t pass through each stage and finally, come to acceptance. It was always one step forward and two steps back. Depression still haunts me. During yoga class, I often feel good and deny that I am going to become ill if I try the Vinyasa class instead of sticking with the mild yin class. But I am learning every day to understand my limits, enjoy the happy times, and lean on my support team when I need help. As I write this now, I am sitting at my computer instead of getting ready for Yin Yoga class. I felt quite achy this morning and realize that taking the class would likely cause a flare. I was angry that I had to put my workout clothing away, but accepting that missing one class would help me stay well through the weekend when I have time with my whole family. There’s always a trade-off, and today I chose the right one.
When I found out my biopsy of my muscle showed mitochondrial damage due to taking Plaquenil, I was angry for a few days. Really Angry. And then I became depressed. But if you have been keeping up with my blog, you’ll see that I have forgiven every doctor or person having to do with my healthcare who has dismissed me, wronged me, or neglected me. Not for them, but to help me be free of holding onto anger.
A Flare With Flair: by Jennifer Spitzer - Bueller 