Does a Diagnosis Change Who I Am?

Two months after an emergency visit to the hospital for 3 days (which I wrote about here), I’ve finally been diagnosed. I have Addison’s Disease. So, not enough for me to have a name for what ails me. It has to declare itself a disease. That causes a lot of dis-ease for me. There’s a strand of thinking that says we are empowered once we are diagnosed. Along the lines: Knowledge is power. Now you know what you’re dealing with. And that classic marketing tag line: If it can’t be measured, it can’t be managed. With a diagnosis, I’m in measurable territory. There’s a map. I can manage.

I should be relieved.

Instead, I feel defeated. I’m not yet able to accept that the price of staying alive is medication for the rest of my life. Before, when my condition was nameless, I could imagine it being easily solved by the integrative medicine protocol that I undertook with great optimism. In fact, the calculated risk I took in going off of the prescribed conventional medications did not, at least in the short term, work out. I had imagined myself proudly declaring to my medical doctors that I’d been off the medication and wasn’t my healing capacity amazing. Instead, I ended up with blood work results that clearly indicated my body spiraling toward another emergency visit. I could feel the deterioration happening. The exhaustion coming back. Instead of my smug satisfaction with the medical doctors, I was contrite, owning up to my infidelity to their recommendations. As the endocrinologist said, I can’t impress on you enough how important it is that you take these medications seriously, if you want to stay alive.

I do. Want to stay alive.

Most days.

My energy rebounded quickly after getting back to the recommended protocol. And, I feel ridiculously fragile. Death accompanies me everywhere. Sure, I know in that mindfulness way that, I could die at any moment. Now this consciousness is not about mindfulness, it’s the knowledge that if I stop putting these little pills in my body three times a day, then my heart will quit. Some days, I hold the pill in my hand and toy with the idea of not taking it, of letting nature take its course.

I wonder if my vitality even counts anymore. My energy is so much a part of my identity. If it’s not real, am I a fake? Who am I?  

I understand that the fact that I have not been on medication before now is a massive privilege. I was not nearly as aware of that privilege as I am now. I understand that what I write here risks triggering people already on medication. You have every right to think, Get over yourself.

I had distanced myself from the possibility of disease. That won’t happen to me, I thought. I took credit for my health; thought I deserved it. After all, I exercise, eat veggies, sleep, meditate … you know, all the things we’re supposed to do. Right? Then my adrenal system stopped functioning. For no discernible reason. Except … these last 18 months have been stressful—my 28-year marriage dissolved; I lost my financial security, my home, my mother, my cat; and now, the cherry on top, this business with my health. I’ve written about the mountain of grief here and the psychological toll of my financial insecurity here.  I haven’t even gotten to the perilous state of the world. 

A loud inner critic attacks me: You failed to manage your stress. This disease is all your fault. More. You deserve this disease, because you have not had adequate empathy for others’ illness, because you were so cossetted in your healthy person privilege. You have brought this on yourself with your hubris, with every time you’ve answered a health questionnaire with the word robust to describe your health. The critic could go on at much greater length, but you get the picture.

A friend of mine, who was trying to be helpful, recently told me that I just needed to shift the narrative in my head. She tried to reassure me by saying that everything happens for a good reason, that there’s always a silver lining and that I need only put a different spin on the events unfolding. My inner critic was delighted to be so affirmed. See, she said, your fault. Oof. I get that my friend and my inner critic have good intentions. They fear that I’ve lost my belief in myself and they want me to pull up my socks. I want to pull up my socks. There’s nothing more annoying than a falling down sock that pesters the foot. Yet, sometimes I just want a caring human to sit down beside me while I take off my shoe and look at my sock and bemoan it’s falling down-ness, as if I were a character in a play written by Samuel Beckett.

At the same time, I actually do want to put one foot in front of the other and I know that will be easier with functional socks. So, even as I still crave the accompaniment and patience of another human, I’ve come up with a sock-friendly narrative I am working on adopting. New narratives don’t happen in a minute.

Here it is: Everything that’s happened in my life, just happened. Not for a good reason. Not with a silver lining. I am grateful to Thomas Moore, the author of Dark Nights of the Soul, for his clear-eyed book, in which he spoke with many people who had been through serious ordeals. Although they had all learned from their challenges, they did not say they wouldn’t have it any other way, or that they were grateful to their ordeal for having awoken them from their slumber. Instead, they said, in more eloquent words than the ones that follow, what happened sucked, I wouldn’t wish it on anyone, and, despite the bad hand I was dealt, I made the decision to grow from the experience and not to fold beneath its weight. The book gave me permission to feel all my grief and rage. Life will serve lemons. We have the right to gnash our teeth and wail or not get out of bed or whatever we need to do to honor and embody the ordeal. What doesn’t serve us is to resist the dark feelings that come with the dark nights. And, the and is key, we then have a choice about how we want to alchemize the lemons we’ve been served. We can bypass and add lots of sugar, hoping to hide the bitter. Or we can make bracing fresh lemonade that cleanses our system.

What is, is. I can either fight against what is, or I can work with it. Some years ago, I had the word compassion tattooed on my arm. It was supposed to remind me to have compassion for others and, crucially, for myself. This ordeal has brought me face to face with the compassion gap caused by the unconscious bias of my previous privilege. My inner critic screams into the gap, provoking an echo response from the canyon walls inside my head. The lemonade opportunity in all this is compassion. So simple. And so not. A super tall, skyscraper of an order.

I have the beginning of a to-do list for this new narrative: I need to begin with a hand outstretched to my critic. After all, compassion, like most things, starts at home. She is working hard to keep me upright and aware. I want, too, to create more ritual around taking my pills, to honor the fact that every time I take one, it’s a conscious choice to live. My friend Lori, who is a Reiki Master, suggested that I infuse my pills with the energy of Reiki and bring to them the intention of receiving their grace into my body as pure light and healing. I had a sudden flash of, Oh, that’s what my levels 1 & 2 Reiki certifications are for. More compassion put into practice.

The last thing that I’ve come up with so far, is to be compassionate with the critic and with all the other voices in my head who are having a hard time: The anxious part of myself, who trembles faced with all the unknowns in my life right now. The grieving part. The demotivated part. All of them.

Just as I long for someone to sit beside me and my falling down sock, I will sit beside my critic and my anxiety and my grief. After all, they are friends who need my support. Earlier in this piece, I wondered who I am and whether my diagnosis changed the answer. I’ve found my way here to several answers. First, I am the same person, with many different, sometimes conflicting and hopefully evolving characteristics. Another answer is aspirational, I want to be a person who sits beside others. And I’ll start with myself.

Now.