How Self Study Can Help Lupus

Written by: Sheba Family

A diagnosis of a complex and unpredictable disease like lupus – for which there is no cure – can result in feelings of loss of control, of helplessness, and of powerlessness.  One of the biggest challenges in managing and treating lupus is the diversity of the symptoms and triggers. Personally, I have found it truly challenging to figure out exactly what triggers my flares since it can be so many things. To make it even more complicated, those things are constantly changing!

The good news is that the more self-aware we become; the easier lupus can be to manage. I have found awareness to be a crucial first action in taking control of my illness. In practical terms, self-awareness means I can help my doctor, nurse, caregiver, partner and support system to help me in my healing journey. Self-study has helped me greatly in life and in lupus. By letting go enough to calmly observe, when possible, I find I am gaining better control of my situation and getting closer to becoming an expert in my own disease.

So how can we garner self-awareness?

In comes Svadhyaya or Self-Study

Contrary to popular Western belief, the essence of yoga has little to do with pretzeled people in expensive gear. As per David Surrenda, founding dean of the Graduate School of Holistic Studies at John F Kennedy University in California, “Yoga is meant to be a system of increasing awareness and decreasing disease.” (Surrenda 2012)

Patanjali defined eight limbs of yoga: abstinences, observances, postures, breath control, withdrawal of the senses, concentration, meditation and absorption. The second limb, personal observances or niyamas in Sanskrit, has been integral to managing my lupus. More specifically, one of the five niyamas is svadhyaya, or self-study. “The word itself is made up of Sva, meaning own, self, or the human soul, and Adhyaya, meaning lesson, lecture, or reading” (Newlyn).

“Honesty is the first chapter in the book of wisdom” – Thomas Jefferson

In my years working with various charities related to lupus, I have met so many admirable people with lupus or “lupies” as we like to call ourselves. I have gleaned from the shared experience that there is a common tendency for lupies to deny their symptoms. I believe this denial is born from the sheer need to survive. The truth of suffering is hard to face, the way it is grueling to look at a deep open cut on our own hand. When I was training to become a lifeguard, we learned to turn victims away from the water after a near drowning to minimize their trauma.

Being diagnosed with a lifelong disease is traumatic, and it can be instinctual to turn away from the open emotional and physical wounds that come with it. Whether it is to deny what is too upsetting to process, protect our loved ones from worry, or simply foster a bad lifestyle habit, it can feel like a relief to ignore what is really going on.

Yet, svadhyaya requires honesty. Complete, even brutal, honesty. A first step can be just to observe without any judgement on severity, repercussions, or needed actions.

“Writing is its own reward” – Henry Miller

If I complain of fevers, my doctor wants to know how frequently, what time of day and the exact temperature of these fevers because the specifics point to different root causes. A second step can be to journal daily with your observations. Even after years of dealing with lupus, the results and patterns can be surprising!

Sometimes journaling can be hard to keep up, when we lupies are feeling loopy. A ‘symptom tracker’ app or a small travel journal can really help.

“The person practicing svadhyaya reads his own book of life, at the same time that he writes and revises it” (Iyengar, 1979, p. 38)

“Rather than being your thoughts and emotions, be the awareness behind them.” -Eckhart Tolle

Many people focus on their physical symptoms as they are easier to pinpoint. It took me years to truly notice the emotional symptoms. The pattern is unmistakable; when I flare the world is a darker place, and knowing it is a symptom that will pass is incredibly comforting.

My emotions then exacerbate my physical symptoms. It is a vicious cycle. I tighten my muscles and clench my jaw when I’m angry leaving me in pain. Crying makes me fever and sleep. It’s woefully predictable. Other symptoms are subtler, so I continue to study these.

On the other hand, when I practice gratitude, my body feels light and easily movable. When I experience emotional peace, my brain fog clears and decision making improves. When I get good news, I am physically energetic.

A third step for self-study can be to learn how emotions affect you physically. I stop in the moment and let my mind travel to each body part and note how that part is feeling. Not only does this allow me to track my emotions, but also their related symptoms. Avoiding judgement on the good/bad here is key.

The head bone affects the lupus bone

While there is no exact consensus, some experts have estimated that humans have around 70,000 thoughts per day (Colier 2017). Our minds are incredibly busy. While many thoughts are necessary, neutral or positive, many of them tend to be repetitive negative thoughts.  Thoughts are almost always at the root of emotion and since emotions tend to have physical manifestations, studying thought is an important fourth step of svadhyaya.

Meditation is the best way I’ve found to achieve this. Some say meditation is quieting our thoughts, but just sitting and watching/observing our thoughts without judging is also meditation. So is repeating a mantra or statement quietly. There are many styles of meditation, so each person needs to find the one that works best. It is also worth remembering that absolutely no one is “good at” meditation when they first start; it is a tool that requires practice and patience and persistence. We must be patient with ourselves, perhaps starting small, as little as five minutes per day, and increasing gradually.  There are meditation apps to help. I use Insight Timer because it has a wide variety of guided meditations, a timer and it’s free!

Not convinced? Check out lupus LA’s blog on how meditation can help with lupus symptoms.

“It is in mantra meditation that svadhyaya—silent, inner recitation—bears its fullest fruit” (Sovik).

Written by, Sheba Family

References

Colier, N. 2017. How to Live Peacefully With Repetitive Negative Thoughts. New York, NY: Psychology Today. Retrieved from https://www.psychologytoday.com/us/blog/inviting-monkey-tea/201703/how-live-peacefully-repetitive-negative-thoughts

Iyengar, B.K.S.(1979). Light on Yoga. New York: Schocken Books.

Newlyn, E. The Niyamas – Svadhyaya or self-study. Netherlands: Ekhart Yoga. Retrieved from https://www.ekhartyoga.com/articles/philosophy/the-niyamas-svadhyaya-or-self-study

Sovik, R. Yoga International. Retrieved from https://yogainternational.com/article/view/understanding-yourself-the-path-of-svadhyaya1

Surrenda, D. 2012. The Purpose of Yoga. New York, NY: The New York Times. Retrieved from https://www.nytimes.com/roomfordebate/2012/01/12/is-yoga-for-narcissists/the-purpose-of-yoga