My True Answer to 'How Are You, Really?' as Someone With a Chronic Illness

If I were to meet you, I’d smile.

Maybe you’d ask me how I am. And my smile might wobble a little. It’s not a question I can easily answer. I don’t want to lie, but if I told you the truth of how I am, you might do that little sideways step and make a mental note not to get stuck next to me next time. So instead I’d say, “Fine, thanks. How are you?” and we would talk about that instead.

But since I’m here to share my story, it might be time at last to break out the real answer: “I’m not doing so well.”

My name is Rachel and I have a neurological disorder that causes a dysfunction of the autonomic nervous system, meaning all the functions of the body that are automatic: breathing, heartbeat, blood pressure, temperature regulation, digestion, bladder and bowel functions — just a few of the things that make our bodies efficient places to live.  My body is constantly searching for the healthy level of homeostasis most people enjoy without ever having to think about it. In my body, all of the aspects of the autonomic nervous system are affected. I have a pacemaker to assist my heart and medications to help with the rest. These measures are the ambulance at the bottom of my cliff. But when you look at me, you can’t see how I am falling. They call my illness an “invisible illness.” It isn’t easily apparent. On my worst days, I’m in the emergency department or here in my bed, dealing with all types of broken body problems. I might be tapping away on my keyboard, connecting with the world in the best way I can, out of sight. But on my good days, when I am visible, I might be beside you, chatting about how you are and smiling. Looking fine.

There is no cure for dysautonomia. My doctors haven’t found a cause, but for some, a cause may be found and a treatment begun. For the majority of us, “treatment” means symptom management. A regime of medications and interventions, it is a ride on a runaway roller coaster in an abandoned theme park – frightening, unpredictable and overwhelming. Autonomic dysfunction like mine is more commonly seen in late stage Parkinson’s disease or multiple sclerosis, but without a primary cause it is rare. There are few of us in Australia and New Zealand, but we are resourceful! We have found each other on the Internet and we work together to find information, resources and hope. I cannot imagine how it must have been for people with rare diseases before the Internet. It makes me want to cry imagining how very isolated they must have been. I am so grateful for my finger-tapping friends all over the world. Shouting two-dimensional hellos into the ether. Arms reaching far across the digital divide with comfort and solidarity.

So, how am I? Really?

So frustrated, so scared. See, I have two kids and they are still so little. They are 6 and 9. I linger at bed times, holding them in my arms, always for just a bit longer. My lips against the hair on the tippy top of a warm head, my cheeks pressed up against the moist stamp of little hands. My thoughts, always on what the future may hold for them.  My heart in my mouth and my own hands grasping at the time slipping right through them. I want to be the mum who walks beside her grown kids, head up high, laughing and joking. Not incontinent, spent and struggling to keep pace with the conversation.

I’m heartbroken. See, I have this husband. He’s the best man I have ever met, and I got to marry him. He’s tall and lovely and practical and smart. When we argue, we make up. When we struggle, we push through. When we love — well, there is no song, no poem, no flower that could help you understand. It’s friendship to the power of two. It’s trust in the face of despair. It’s warm and good. It took me so long to find him, and then dysautonomia found me. How is that fair? It breaks my heart he also has to live with my diagnosis. My husband, my friend. A commitment in sickness and in health, but where is the health? I want to be the wife he can run away with, when our child-rearing is done. The wife he can play with — he’ll chase and I’ll run.

I feel lost and empty. See, I had a great career. I was a teacher and I loved it. I worked with kids who had exceptional abilities. And I still think about every child I have ever taught. I still yearn for a classroom of my own and a chance to engage in those exchanges when learning is the light illuminating our world. Where sparks fly and inspirations blaze. Where questions and commentary, connections and community fill me with hope for the future of our world. I miss being their teacher. I miss seeing them shine and watching their possibilities unfold. I want to be the one lighting the bonfire. I have so much tinder for the fire! But now, I just teach myself. Patience. Every day. I grit my teeth and get through the next thing. I swallow my shame about what my body won’t do.

But I’m really glad you asked how I am. Because even though I am all of those things I write about above, I am also amazed and so genuinely gobsmacked by this life. I have lost so many of the things that meant so much to me. I had very specific plans for my life, for all the things I thought I should achieve. But I am finding out something quite extraordinary: I actually have so much. I have everything that matters.

I have love. I have a purpose. I have words (and I intend to use them!). Being sick is not a picnic. But it is a bit of a fast track to finding your true self. And in spite of everything, I am back to the basics of Rach. For the first time in all my years of life, I like me. I have so much more insight and empathy than I could ever have had before. I am writing and connecting. I am meeting “my people” from right where I am. In the comfortable discomfort of the present situation. From my bed. From a place of real, true me. I feel all these sadnesses, all the fear and loss and frustration. But I also feel a peculiar kind of free.

I feel like I have found me. I turn and I smile at you. Because actually, I am fine, thanks.

And truly, how are you?