Lupus? Is it Lupus??
“What happened to your face?”
”I don’t know,” I sheepishly replied, looking at the ground.
The subway employee handed me my ticket, eyes as big as saucers. She was staring at the gnarliest breakout I’d ever experienced. Giant pimples on my nose and cheeks. Tight, bright red, and throbbing skin. I could feel my pulse in my face.
Our family of four lived in Thailand at the time and were on a long weekend trip to Singapore- an hour’s flight away. It was January of 2020. The pandemic was rolling out, but we had no idea how bad it was going to be, or how long it would last. We had just decided to move back to the United States after living in Thailand for 7 years, and were beginning to realize the magnitude of what was coming. Needless to say, I was a little stressed.
Walking back to our hotel in the sticky heat, I racked my brain to think of what might be behind this breakout. What was happening to me?!
When we returned to Bangkok, I made an appointment with a dermatologist who gasped when she saw me. Eyes wide, she said, “What happened?”
“I don’t know,” I said through tears.
She ordered blood work, gave me medication to manage the pain, and sent me home. A few days later, sitting across from her once again, she told me my symptoms indicated a diagnosis of Lupus. All I could think about was the Seinfeld episode when George Costanza was in the hospital and said to the doctor, “What is it- meningitis? Scoliosis? Lupus? Is it Lupus??”
Well, for me, it was Lupus. Unmedicated, I experience inflammation in my face, and incredibly painful dry eyes. The dermatologist explained I would need to take medication indefinitely, and that I’ll need to get my retinas scanned every year. With great concern, she told me that a side effect of the medication for some patients is blindness. (I have since found out that that side effect is quite rare, and there is no indication at this point that blindness is happening to me.)
So as a 42 year old, about to move back to a country with the most expensive medical care in the world, I found out that I was going to need regular care with an ophthalmologist, and to be on medication for the rest of my life.
There was a lot more to this story, but I share it here because not only did it represent a significant amount of stress; it represented a loss. Before that diagnosis, health had been an assumption. Like oxygen. It was so important, I knew that, but it was always there. That diagnosis day, something changed. Health was no longer the default reality.
But there were lots of other losses connected to that day. I lost membership in the “uncomplicated health club,” and was now part of the “autoimmune disease club”. I had a somewhat mysterious, incurable (for now) illness. I say that with great humility, as the price tag on this sickness is quite low compared to many. But still, I went from feeling otherwise healthy, to now having a chronic disease.
This diagnosis also felt like a solid and swift introduction to midlife. My frailty shifted from the periphery to front and center. This idea that I’m invincible crumbled a bit around the edges. And the urgent need to secure health insurance right away after our move was looming on the horizon. All these are called secondary losses.
The reason I share this story is to name and describe the primary and secondary losses I experienced, in hopes that it will help you to name yours. My encouragement for you in this is, first of all, stay curious about what your losses may be. Sometimes when I sit with clients and they’re processing a difficult situation, I’ll say something like, “Wow- that sounds like a significant loss.” It often is a helpful naming for clients, to realize that they HAVE lost something important. This also leads to realization of secondary losses. Things like peace, settledness, connection, or hope. As we notice these things, we get to give them the care and attention they need.
In the weeks to come I’ll write more about what to do with the losses as you uncover them. Stay tuned.
And if as you read you’re feeling the need to process losses that are coming up, feel free to reach out to talk about the possibility of therapy (if you live in Colorado). You can reach me at kim@kimsmithcounseling.com
Keep checking back. I’ll be writing more in the weeks to come.
Insights in a tent, in the rain
Our family went camping last weekend with some dear friends. It was raining our first night, so we did the best we could to find the fun and not think about how cold and uncomfortable we were. While playing a game called Loaded Questions, we all had to answer the question, “What feels like it takes forever, and never turns out quite the way you would hope?”
The answer of a fellow camper caught my attention. He said, “summer.”
Inwardly, my heart said yes. The kind of yes that feels like, “You too? I’m not alone?” It also felt like a sigh with slumped shoulders. Summer should be fun. I hate that my experience of summer feels like that.
Each May, I bump into this reality. When I go into Target and see beach towels and coolers, and I’m thinking about needing to finish admin work. When my husband the teacher and our two kids are deciding whether they should go to the lake tomorrow or on a hike. I try to do all the things to buffer my disappointment: to practice gratitude for the fun weekend we just had, to think about our short family trip coming up. Those things aren’t bad. Gratitude CAN hold power to right the ship. We ARE privileged- there are many in the world who are suffering far more than our family.
But still, I couldn’t quite stave off disappointment.
Which brings me to what I wanted to write about, and what struck me so deeply as we sat under the tent in the rain.
Grief.
When most of us hear grief, we think of losing someone to death or a big move to another state or country. We don’t think about the thousands of paper cuts we accumulate over the days and weeks of our lives. Things like not getting to connect with our partner in the ways we would hope. Our kid deciding to quit football when we love the game. Wishing you could buy a house, but never being able to get ahead financially. Then there are the bigger ones: health challenges. Divorce, or the end of a relationship. Loved ones with addiction. Even graduation and marriage involve grief!
What I learned on that camping trip is that noticing grief, tending to it rather than ignoring it, is the path forward. M. Scott Peck tells us that “mental health is an ongoing process of dedication to reality at all costs.” So in the moment when I realized that summer as a grownup isn’t all that it’s cracked up to be, wisdom required me to notice that. Maybe to let tears come later when I was picking up wet muddy trash that didn’t make it into our camp trash bag.
Something shifted in me when my friend named his disappointment. Clarity came. I understood that summer is hard for another working parent other than me. My eyes glisten with sadness even as I write this now. Even though summertime IS about camping, watermelon, and trips to the mountains; it’s also about heat, finding house sitters, and financing all the fun we’re having. Which is sometimes disappointing and hard. I was open to feeling the disappointment.
So my suggestion to you? Pay attention. Notice what stirs your heart. Notice what feels tricky, sad, or makes you mad. Stay curious about that. And when you discover something that feels tender, follow that thread. Give yourself permission and a place to notice, name, and feel what’s going on for you. See if you can show compassion to the part of your heart that grieves, and then see what happens.
If this resonates, check back in with me. I’ll be writing more on grief in the weeks to come. Maybe even offering an event in Northern Colorado to help you process and work through all kinds of different losses.
Or, if this awakened a desire for connection and healing, please reach out. I’d be honored to sit with you and take a closer look at your story and create space for you to metabolize your losses and work them through. Shoot me an email at kim@kimsmithcounseling and let’s talk.
**So much of what I’ve learned about this has been from Francis Weller’s book The Wild Edge of Sorrow, and from Adam Young’s thoughtful expansion of Weller’s work. Feel free to check out Adam’s podcast if you want a deeper dive on this topic:
https://adamyoungcounseling.com/how-to-heal-from-sorrow-and-grief-part-1/