Chronic Snarkopolist: Chronic Illness and Identity: Who Am I Today?
Hello my loves!
I heard a woman talking about her chronic illness and she said, “Lupus has stolen my identity.” From that I understood that she lost much of her selfhood to chronic illness. She cannot work a full week of work but has to work part time. She can no longer sustain the athletic lifestyle she used to engage in. And I have begun to think a great deal about illness and identity.
We are many shifting complex and intersecting identities our entire lives. If you are a mother and you work full time and you are a wife and you attend any volunteer activities or hobbies or functions you must shift “who” you are to fit all of those roles at any given time. That is why there is such a conflict when someone gets stick and we must take a day off work to deal with a sick child because the “mother identity” trumps the “worker” identity. Or when we get sick our illness calls out and says, “PAY ATTENTION NOW” and we must begin to listen more attentively to our bodies instead of to the other things in our lives we were doing.
Things take a back seat. I used to send out greeting cards and many written notes and gifts. Now, I send far fewer. I make fewer calls. My finances are tight so I can afford much less extravagant gifts. Hand making things takes so much of my time and energy even “thought that counts” gifts are much smaller.
A friend who is a healthy young physician recently broke his leg. For the first time in his life he is navigating both opiate drugs, pain, and being off work for a short time. He is frustrated because he cannot think as clearly as he wants. His body is reacting to pain meds the way all bodies do. And he WANTS to “go walk 20 miles” the way we all do. Our bodies were designed to MOVE and exercise and enjoy life.
He said he is “learning on a visceral level how it feels to be a patient stuck with a body that’s” not working and pain drugs that “dampen the brain.” He’s getting it. No one WANTS to have a body that doesn’t work. I love my friend. I would never want such an injury for anyone. And yet he knows his leg will heal. He knows he’ll soon be back working with people and even the financial blow to being off work and the physical blow will be recovered. He will never truly understand the psychology of chronic illness. Yet he has a closer understanding than most doctors.
I explained to him for some of us, it is not about “mastering it” but rolling with it. And, sadly, I feel that some people truly succumb to being ill so much they truly embrace being ill and forget they can heal. And when I say heal, I don’t mean “get well.” For some people there is no “cure” for their illness. For some, healing is going to be living in love and learning to navigate and support and love. For others, there will be curing and moving forward and remission. For others, there is a mix.
One life long diabetic, upon changing his diet, eating gluten free, and engaging in a new exercise regime began to notice he didn’t need one of his two insulin injections every morning. He’d wake up and check his blood glucose and say, “Wow, I’m under 100.” (which is a normal reading, something he was not used to ). He began to panic. He confessed he didn’t know who he was anymore without having high blood sugar and as the diabetes was healing. He might always have diabetes but with it “controlled” he was going to have to learn new identities and new ways of engaging life.
I understood. Sometimes I stop and realizing that without collections calls and the fear of losing my insurance or the fear of going out of remission I don’t know who I am. For me, the FEAR of my health failing is more imminent than my bad health ever is. I can handle the emergencies because they are urgent and in my face. I can handle the diagnoses and the medications and the necessary methods of taking care of myself.
But as I continue to heal, some physically, and sometimes emotionally, I get distance on being “the sick girl.” I am learning to have identities like a knitter, and a music lover, and someone who loves hockey. I love chai tea, comedy, improv, and f-bombs. All of these identities move me away from someone keeping a close eye on my health. Yet, like my diabetic friend, I’m constantly aware of my healing and I have an underlying sense of impermanence about my health and healing. “How long will I feel OK?” I wonder. “How long will this sense of well being last?” I ask myself. “How long will my credit be damaged as a result of this? Will I ever be able to go back to my old life?”
I don’t think my identity is stolen. I do think it has altered. We are infinitely capable of changing and dealing with new ideas. Yet, one friend once told me, “Change is hard and it chafes and it hurts. Dealing with change is unpleasant.” So yes, it does feel like a stolen identity or a death when we become ill because our identities have to shift and wrap around a new concept of ourselves. We have to learn to do new things and we have to learn to perceive ourselves in new ways. Unlike my friend, some of us see no countdown of days when our bodies will be mended. And understanding the permanence of our situation, we must carryon and live and heal and be who we are.
And that takes massive courage. It really does. I promise it does.
I would love to hear what you have to say about this. Not a single soul here has gone through this without dealing with identity, health, and loss and change. I want to know how you feel about learning and re-learning who you are and seeing yourself in new ways and dealing with the idea that sometimes you are not going to be “your old self” anymore. Is that a stolen identity? Do you fear healing or am I nuts? Tell me! I must know!
I’ll be back same time next week! Kiss kiss!
Tags: chronic conditions column, Chronic Snarkopolist, feeling broken, financial burdens due to chronic illness, finding your way through chronic illness, healing, healing things to occupy time, learning how to roll with the punches of illness, losing friends due to chronic illness, stuck inside a body that doesn't work, trying to shift perspective, written by Melissa Travis