How dance/movement therapy helped me with my Lupus diagnosis
“You have lupus.”
I watched my rheumatologist's eyes waiting for me to have a flood of emotional responses. I mean, that is how most people would respond.
Instead, I felt all of the prefrontal cortex responses clicking on going into provider mode [cue robotic sound effects]. Except this time I am playing both provider and client for the sake of my own sanity. I calmly looked at her through my glasses and asked “Ok, So now what?” through my mask. As she went on to explain next steps I continued to feel waves of relief. While I was not jumping for joy to hear of my body taking on this new identity, one that attacks itself, I also felt relief in finally naming it. She continued to talk to me about lifestyle changes and medication, oh and the biggest thing is: "don't stress.” Imagine telling a woman of color in 2022 not to stress.
For the past five years, I had this gut feeling something was wrong. Now here it is through multiple blood tests, symptoms checklists, and professional opinion(s). So where does dance/movement therapy come into play?
Without my background and training in dance/movement therapy, I don't know if I would've been so persistent to combat gaslighting from the medical field, while translating new bodily sensations into words. This persistence will need to remain with me the rest of my life. Chronic illnesses can take years to diagnose, and a lifetime of treatment. Part of this is due to their complexity. Autoimmune disorders like Lupus don't have a test to run and confirm the diagnosis. It takes a close relationship with providers who are really listening to you, and most importantly believe you.
Another part is the terrible concoction of medical gaslighting, plus patients not even having access to their own feelings. This lack of words to express oneself is often due to disconnection to one’s own body. How can you blame them? Who wants to be connected to their body when they're in pain? However, sometimes the only way is through.
Sensing the feelings:
In my case my “through” was to be present enough to feel what's going on, lean into resistance, and start to name it. I really want to emphasize my process was not only a profound mind-body connection, it was also spirit driven and artistic. I made many collages over the years, wrote songs to myself, and simply rolled around on my yoga mat to experience both the joys and pains of my innermost physical and mental feelings. All of this gave me a different way of processing that wasn't requiring language. These are the moments I actually want to tell the prefrontal cortex shhhhh, I need a minute to think. Not with my head, but with my hands that are achy and sore. My hands who feel like they will break if I try to open one more jar. To think with my feet that have been clenched for probably a few weeks now. To think with my shoulders that are hanging tightly by my ears - so much so that I can't even hear my lats yelling at me to please relax. These were my kinesthetic parts telling me something was wrong before I could cognitively contemplate or express myself through words. Every “random" symptom was my body saying “Help me!”
Dance/Movement therapy kept the mind-body-spirit connection at the forefront of my decision making. Even on my worst days I reminded myself my body was giving me information I needed, with or without words. It was my job to listen and trust it. It was my job to set boundaries accordingly, with or without a diagnosis. I had to practice being confident in saying “you know what, I need a mental health day.” Without feeling like I had to explain myself.
For those 5 years, (and the next 100) every time a symptom came up it was a sign to slow down. It was a sign there was a boundary being crossed, or one I wasn't setting. When I did set boundaries, I definitely didn't know I was following doctors’ orders on a purely instinctual level. Lupus, as I’ve learned, is quite a complex diagnosis, easily exacerbated by stressors. Whether they be environmental, interpersonal, or deeply personal stressors - to name a few. In hindsight, diagnoses or not, I was responding to each symptom in a holistic way. I consumed nourishing food, made art, or moved my body in ways that felt good (sometimes this meant exercise, sometimes not). I played music, and built healthy relationships. Some of the more powerful moments were when I learned to just exist and let that be enough. I learned how to let go of the attachment to productivity and justifying a need to rest.
Amongst my healing “wins” was a lot of trial and error, and ongoing curiosity about what the western medical field thinks is up with me.
Claiming your pain
The thing with going to medical appointments, is that you're required to have not only words, but often the “right” words, to be able to explain to a medical professional what is going on. I have two languages under my belt and I still couldn't find the words for half the symptoms. Why can't I just walk into a doctor's office and say “Everything hurts all the time, I am exhausted no matter how much sleep I get, and I don't feel like myself,” and that be valid enough? To get to where I am now, I circled back to my training as a dance/movement therapist.
I knew the following things to be true:
Women tend to normalize their pain. Thus minimizing their symptoms, and often pushing them away or neglecting them altogether.
It is possible for chronic stress to induce autoimmune responses, and even lead to triggering an autoimmune disorder.
Our bodies are full of wisdom, including the wisdom to tell us when something is off before we can explain it with words.
As a dancer, you learn to be tapped into your body’s cues. It's like how a car knows when your tire pressure is going even a little flat. We don't question that light going off, we check it right away. That's the same approach I take to my body. When a light goes off, I check it. Or at least, I try. I remember telling providers "I feel puffy.” I would get a lot of blank stares back. Today, I know this is inflammation in my body caused by chronic stress. I highly doubt most people get to that verbatim quickly. If there’s anything I’ve learned as a therapist, it’s that people cry for help in different ways. To truly heal, we need all types of providers to lean in and meet people where we are. There can be a lot behind a headache, fatigue or someone not feeling like themselves.
Talking to your body in a more positive way
Dancers aren't the only ones who are good at detecting when something is “off”. Many different movement specialists, artistic beings and empaths have a strong intuition when something is wrong. While there is great value in this, it can also be very overwhelming. You can become a little too tuned in to everything and everyone around you. This is where boundary setting is evermore important.
I admit I was not being kind to myself for many moments those years. I was expecting myself to meet the same expectations in my work and personal life that got me to the point of chronic stress in the first place.
While Lupus has inevitably taken a role in my narrative, I now tell myself that with or without a diagnosed condition, it's an important skill to learn to pause. The high stress and productivity-based life I lived before was not sustainable. Pushing myself past my limits meant my body had to tell me no, whether I liked it or not. Creating a life that allows me to manage my symptoms without shame, enjoy the little things in life for the sake of enjoying them, and make decisions from a place of intuitive empowerment brings me much more joy - which ironically is more productive in the long run. We can talk about reclaiming the word “productivity” in another post.
There are a few more takeaways from this process that I've listed below. To elaborate on the biggest ones for me: I hope for everyone to learn the incredible skill that is to listen to your body. To be able to translate your feelings into words. To know what it means to be seen and heard. Yes, I want you to be seen and heard by people in power like providers. But maybe even more importantly, to be brave enough to see and hear yourself. Even through your greatest moments of pain. To be honest with yourself about where you're at, including where you're resisting your own self care. You don't need a diagnosis to set those boundaries and begin living your best life, one day at a time. You can start that process today.
Takeaways:
Your feelings are valid. Find providers who respect and listen to you.
You do not have to wait for a diagnosis, or have a chronic illness to set boundaries around what is good, sustainable and helpful to your well-being.
You are the expert of your body. It is a wealth of information to draw knowledge from, and you are empowered to express that knowledge in any language or artistic representation you want.
