Time heals. We tell that to young people who have had their hearts broken. Sometimes we say it to people who have had tragic losses, when we know how much they are hurting but don’t know what to say to help them hurt less. If we are the one hurting we probably need to hear it, we need to know that the emotional pain will lessen – will get easier to bear. But when we are in the middle of our pain we also want to scream “How do you know? How can you possibly know that this all-consuming pain deep in my gut will ever end?”
The experts on grief say that the only way to find resolution is to face our loss and feel our pain. This is hard work and no one can tell us the best way to grieve because there are so many different factors, such as the type of loss and the personality of the person. The grief following developing a chronic illness (fibromyalgia with chronic pain and fatigue) was a different kind of hard than other times of grief. Developing a chronic condition, especially one that involves pain, seems to changes so much about our lives and our sense of self.
I have heard many people say, on blogs and discussion boards, that chronic illness and pain makes them feel like their life has fallen apart and they have lost their sense of self. I felt like I had lost my internal bearings, my security, something at my very core, something very important, but it was difficult for me to identify exactly what it was. I kept wanting to say that I had lost my self, but obviously that wasn’t true; my self was still waking up in the morning, fixing supper, brushing my teeth, going to the store for a gallon of milk, going to work, having lunch with friends. But I also wrote in my journal that I didn’t think it was an exaggeration to say I didn’t know who I was any more – and this brought tears to my eyes.
What caused me to cry most often was my fear of not being able to work; I wrote about that here. But it wasn’t just “work” work, it was being able to do the work of living my life fully, to be who I had known me to be as a wife and mother and friend and grandmother and church member and aunt and neighbor and… In some inexplicable way I had lost “me” and I didn’t know if I would ever get “her” back.
What does it mean to lose our self? In part it involves losing our ability to fulfill important roles. If we define our self as a parent, we lose our ability to parent, if we pride ourselves on being a caregiver we lose our ability to give care, a clear thinker can no long think, a provider can no longer provide, a hard worker can no longer work hard, a gardener can no longer garden. Sometimes it felt lost – totally gone. Sometimes only altered. Most of the time I didn’t know what was happening to me and this was scary. So much of my life activity was changing – I’ve written about that here.
My fear of so many losses led to a lot of emotional pain. I cried, sometimes so hard I doubled over. I sobbed. And I was angry – really angry. I went through a few months of being numb to the world – of being depressed and feeling the sadness at the back of my eyes. And then I cried some more. This didn’t happen in public, although some of it showed up in the form of more swear words leaking out inappropriately and less time on the outside of my door. I spent a lot of time staring into space trying to figure it all out.
This work of identifying what I was losing, according to the experts, is a necessary task if I was to heal. There was another aspect, however. People who develop chronic illnesses frequently feel defective. The loss of physical ability made me feel diminished, like less of a person. I worried about whether other people, my husband, family and friends, would still like me. After taking care of myself, I didn’t feel like I had anything left to give so why would they want me in their lives. From my journal:
I looked at the cows at the farm today and was struck by how boring their life must be. All they do is eat and poop and sleep and eat and poop. I wonder if I am struggling with whether my life has any worth if I can’t be productive, if I can’t do for and give to others. Radical thought: Could it be possible that the sole purpose of my life is just to enjoy being alive? Lord, what do you want from me at this point in my life? Your second greatest commandment is to love one another. What does love look like when I have fibromyalgia? Does how I love change because I am sick? There is a flip side of this. Does being sick change how I let others love me? Does being sick make me less loveable? This question has some emotional kick.
Becoming aware of my fears, bringing them out into the light of day and rational thought, made it possible for me to begin to manage them. But getting control of my fears and feelings of loss wasn’t enough – I also longed to find a part of me that still existed. I began looking for evidence that I still had worth and had the same core self even though I felt vulnerable and my life felt uncertain.
Our beliefs about ourselves, our sense of self, are formed and transformed within relationships with others – what others mirror back to us (for a review of the extensive literature on this see Mikulincer & Shaver). I knew it was important to balance the negative thoughts and feelings I was experiencing so I looked for validation of my worth from within my relationships. I needed to reassure myself that the people in my life could see worth in me even when I felt defective. Here is a list I wrote in my journal:
- My husband still loves me and desires me.
- A valued friend is always eager to have lunch with me and understands the impact fibromyalgia is having on my self-esteem because of having Graves’s disease last fall. She treasures me for all else that I am. She wants my help in picking out quilt fabric.
- Another friend was excited to see me and wants to have lunch with me on Monday. She also told me my suggestions for teaching her pharmacology course were very helpful.
- Our long-time friends still want to get together for dinner and cards every month.
- An esteemed administrator said she has missed having me on campus. She also said she really enjoys my insights into the books we read for book club.
- A colleague who works under me said I am missed and my sabbatical has just started.
- A friend sought me out at the picnic last weekend and really seems to enjoy how we kibitz with each other.
- Another very capable colleague/friend said she enjoyed having supper with us and believes I can accomplish the program expansion we are going to propose. She loves the colors I chose for my living room.
- A newer church friend seeks me out and has invited us to two different events.
- A long-time friend asked me to run over to their house to give my opinion on their living room decorating.
- Three different people went out of their way to say hi to me when I was on campus last week.
- A colleague said she appreciated my encouragement and insight into starting her Ph.D. program.
I made these lists in my journal several times over the next few years as I was struggling to find emotional healing. They were an important way for me to find meaning and re-define myself. I was looking for a new way of living that didn’t include the sick role but instead had integrity. I was struggling to continue my life history, my story line, to include living with a chronic illness but also to re-member who I was; to put myself back together. Parker Palmer wrote these powerful words that resonated with what I was experiencing.
Re-membering involves putting ourselves back together, recovering identity and integrity, reclaiming the wholeness of our lives. When we forget who we are we do not merely drop some data. We dis-member ourselves, with unhappy consequences for our politics, our work, our hearts.
A large part of being able to continue my life story was figuring out how to connect who I once was with the person who now has limitation due to FM. Although the wonderful people who are a part of my life help to define me, I also knew there was a core me that I didn’t want to lose but no longer knew (or remembered). I was searching for some continuity of me. Here is a journal post from the third year after developing FM:
I found a picture of me when I was about 2 years old that delights me. When I look at the picture, I see myself now. That little girl striking a pose is so “me.” There I stand, looking up at the giants, with my feet firmly planted, my hands on my hips, training panties on, one sleeve pulled up, a smile on my face, and a goofy but cute hat on my head. (Personal Journal, 2007)
I hadn’t lost me after all; I just had to look way back to remember who I am. And knowing who I am on the inside gives me the courage to continue the work of emotional healing and maintaining wellness while living with a chronic illness. Yes, time heals.
Here are some bloggers who have impacted on my life and my healing in ways that relate to this post, at least somewhat closely. They are expressing their reality, and in many ways also reflecting mine. Maybe they will bring some emotional healing to you. Together we will make sense of physical and emotional pain.
If you have posted on a related topic or we have inspired a future post, please feel free to leave a link to your blog in a comment with a sentence or two describing your topic.