How Are You?
At an appointment with my hematologist recently, she excitedly asked me how I was doing. I hadn’t seen her in a while. At the start of the virtual visit she smiles big and ask in her loud, doctor voice, “How are you?” I thought about answering with, “Good how are you?” but then thought, this is my chance to be honest. “I’m frustrated. I am exhausted all the time.” I explained. “I actually feel terrible about being so tired. It’s been a few years, why don’t I feel better?” She looked at me and said, “Your body has been fighting constantly for over three years without any breaks. You are on a lot of medication. Of course you’re tired! Your body is exhausted.” I felt validated and seen—not something that happens often in a doctor’s office.
Being in a cycle of chronic recovery, I feel like I constantly need to prove that I’m trying. I feel like I need to show everyone around me and the universe, that I’m not lazy and I am trying to get well. I don’t have an illness that’s highly visible. I have several that are mainly invisible. Each day brings a new bet on which one is going to flare up and make life difficult. Having my doctor acknowledge the why about my exhaustion made me feel like I have permission to still be recovering. Permission to not be ok.
Toxic positivity is something I decided to reject early in this medical odyssey. Initially, I struggled when people asked me how I was doing. I resisted the urge to reply with, “fine, good or ok”. I told the truth. My long, often complicated answers seemed to make people a little uneasy and unsure of how to respond. Still, I wasn’t willing to pretend I was doing better than I was. I learned instead to say things like, “pretty ok” and “and good for the moment” or, “how much time do you have?”.
Often, what well-intentioned friends and family forget it that it’s important to let a person grieve. You have to give them space to feel all the feelings. You cannot assume where someone is in their grief. In terms of a bone marrow transplant, what someone goes through before, during and after is hard. It’s not a quick fix or quick recovery. In these years of recovery, I’ve learned the impact of this cure and all that comes with it is lifelong.
Some days I feel fine. Good, even. Other days, I feel terrible and sad and lost. My body is a different now and I can’t show up in life like I did before transplant. I can’t think of a body system that hasn’t been impacted. It’s going to take time to adapt.
Well-intentioned people want to cheer me up and say, “But you are alive!”
This feels reminiscent of my childhood spent hearing, “Smile! You look so pretty when you smile!” (don’t say that to people).
I am alive. I am happy about that. I have more to be grateful for than sad about and I struggle. My quality of life is different. I am learning how to be in this body and this brain and still be happy and fulfilled. It is challenging. To tell me I can only be grateful is dismissive. I get to be grateful and grieve.
In order to allow people to grieve fully, it requires some reconditioning—for both the patient (recoverer) and supporters. As a recoverer, you don’t have to smile or pretend you are doing better than you are for the sake of making someone else more comfortable. As supporters, we need to make space for recoverers to be in whatever stage of grief and recovery they are in for as long as they need.
Practice taking time to listen when you ask someone how they are doing. Listen to their whole answer, without expectation. We can start to create spaces where we show up for each other fully and without judgement. When you free someone of needing to be responsible for your reaction, you allow them to fully own theirs.