Can you truly be happy when living with a debilitating chronic illness or health condition?
The question came up when talking to a friend recently, when I had an emotional meltdown about the incapacitating, chronic ramifications of my traumatic brain injury (TBI), including dysautonomia and chronic fatigue syndrome, and the topic deserves further inquiry and excavation.
As a Yoga instructor with an additional certification in Yoga Philosophy, the topic of happiness and contentment was a focus in a recent course I taught. You don’t have to be a Yoga practitioner or have any knowledge of or interest in it to glean from this wisdom tradition, so stay with me. In Sanskrit, the term for contentment is santoṣa, pronounced sun-toe-shuh, and is typically spelled santosha in English. Contentment in the Yoga tradition doesn’t arise or get influenced by anything outside of us, including external circumstances. True (spiritual) contentment and happiness is an inside job and achieved when we are satisfied with what we have: both internally and externally, but more importantly the former.
When I studied santoṣa in a course with one of my incredible, awe-inspiring teachers, Dr. Kavitha Chinnaiyan (or Kavithaji, out of respect) of Śabda Institute, she mentioned three essentials that one needs to attain this sense of contentment and happiness. Even though happiness on a spiritual level can’t be influenced by external circumstances, when we live in human bodies and the physical world, we really do need:
- Feeling your life is worth something
To feel truly happy, and for basic survival, one’s immediate needs must be met, including food, water, shelter, clothing, safety (both physical and emotional), and enough money to supply the first four. When someone doesn’t have even one or all of these things, life is extremely hard. If you’ve ever been without any of these essential needs, you understand. You don’t necessarily need an excess of these necessities, but you do need enough to sustain you and those that depend on you, like partners, children, parents, and/or pets. If all your critical needs have been met in your life, then think of a time when you were really and I mean really hungry, cold, or had to go to the bathroom. Could you think about anything else? Nope. Were you unhappy in that moment? Yep. Not until your need was met could you focus on something else, right? If you’re always just trying to survive, survival and getting the things necessary to survive occupy your mind almost all the time. Can you truly experience santoṣa on a spiritual and/or human level if you don’t have enough resources?
Feeling your life is worth something, and that you and your life have purpose are essential to true happiness. I think most people want to discover and live their purpose in life. I know I do. I know that I want to feel like my life is valuable and worth something. Personally, I want my life to make a positive difference in the world. The quest to discover one’s purpose is one that seems to transcend all time and place in the collective life of humanity. Some folx are lucky to know their purpose early on in life. For others, it takes an entire lifetime to discover. It’s no competition, just how the mystery of Life unfolds. Most of the time our purpose chooses us, not the other way around. Your purpose could be your profession, but it doesn’t have to be. I believe, too, that our purpose can change, or at least take on different variations, or “flavors,” if you will.
I always thought that my career as a licensed bodyworker was my purpose, helping clients experience freedom from chronic pain. It was years later that one of my would-become coaches said, “You’re an educator.” That honestly was one of the best compliments I’ve ever received. How right she was, and I didn’t really realize it until she called it out (in front of a large group to whom she was presenting, no less). So much of my work with clients, and later also Yoga students, was and is education. When chronic fatigue syndrome and dysautonomia symptoms gradually worsened and I had to close my professional practice of 12 years and end my 14-year career, I felt like I’d lost my purpose. Sure, I’d written a book, but besides teaching one online Yoga class per week, I felt like my life no longer had the same value. I didn’t think I was making a difference, helping anyone, or contributing to the world at large. I was lying on the couch, not able to do much most of the time. Truth is, I still spend a lot of time lying on the couch, and still struggle with my purpose in my current state. Deep down, though, I know that being disabled doesn’t mean I don’t have a purpose. Educating others about traumatic brain injury, dysautonomia, chronic illness, and related issues has now become my focus, rather than teaching bodywork clients about their bodies, movement, and healing. Same purpose: different focus or “flavor.” When you feel like you’ve lost your purpose, or haven’t found it to begin with, take a mental step back. Or ten. Try to look at your life from a greater distance and vantage point. You might start to see patterns that indicate purpose. If not, perhaps it hasn’t found you yet. Don’t worry, it’ll find you on its own time, not yours (frustrating as hell, I know, but be patient).
Kavithaji said that belonging, appreciation, and validation, are included in the category of feeling your life is worth something. When you find communities to which you feel like you belong (biological or chosen family, work, social groups, etc.), they usually express appreciation for the things you do and the person you are, and appropriately validate your emotions and experiences. All these things make you feel like you matter, because you do. When you know you matter, you’re likely to be happier. Remember, though, that like true santoṣa, knowing you matter is an inside job regardless of external circumstances or influence, but being appreciated, validated, and part of a community certainly helps. Can you still be deeply, truly happy when you lose community because of your health?
Before my brain injury I was “healthy.” I was physically active with good energy, going to both the gym and yoga studio numerous times per week year-round, doing strenuous hikes in the summers, and generally not spending much time sitting or lying around. In addition to seeing clients, I participated in women’s and business groups. Clearly, I was a woman on the go. Post TBI things changed. There were the immediate changes (read that story in my book), but the gradual worsening of chronic fatigue syndrome and dysautonomia that showed up soon after my injury took an increasing toll on both my physical and mental health. Add hormone imbalances because of concussion-induced pituitary damage, clinical depression, sleep challenges, and more, and you’re looking at a woman who neither feels nor looks her best anymore, despite being super proactive and getting the help I need. With my life as I knew it turned upside down, becoming “disabled” was a lot to swallow and digest. I generally feel pretty crappy most days and can do only a fraction of the things I used to, things that added tremendous joy to my life, so how can I find true, deep, spiritual contentment when the challenges my physical body experiences make it hard to do anything and often leave me feeling depressed and frustrated?
My worsening health issues have caused me to lose my numerous communities because I could no longer attend or participate, and then the pandemic provided a double whammy as in-person groups were cancelled, and people disappeared as they coped in their own way. One of my main social groups also closed, but for other reasons (the leader went to grad school). It all sounds so depressing at times, making you think, “Well no, of course you can’t truly be happy with all that going on.” On bad days, I think you’re right. Then I dig deep, focus on gratitude and all the good things going on in my life (there are of course too many things to count), recognize my (unjust) privilege on numerous levels, try to make the most each day, and connect with the contentment I do have. I’ve read stories of people, particularly spiritual masters who, even in the face of terminal illness, are truly happy and content. Some days I find their stories inspiring, and others I skeptically think, “Really?”
Coming back to our original question: can you truly be happy when living with a debilitating chronic illness or health condition? Maybe your own answer depends on the day as it does mine, or perhaps it depends on whether you’re referring to spiritual or embodied human happiness. You might have a solid “yes” or “no,” or have no idea at all. Sometimes these questions don’t have a concrete answer. In most of my Yoga studies questions are answered with more questions, creating both more clarity and confusion at the same time. If this post has done that for you, great.
What do you think? Please share your thoughts in the comments. I’d love to hear them.