An alternative title to this post could be ‘how to love someone through any kind of pain that is persistent, long term or chronic, unpredictable, uncontrolled, or poorly understood by the medical community’. Situations where this applies include grief, chronic pain, depression or anxiety, disability, and marginalization - (which I have recently heard named alternatively as ‘underestimated’, which I love - as it names the pain of never being taken seriously, or of not being given what’s due, or repeatedly suppressed or ignored).
If you are one of those people who, either as a kid or an adult, found yoga or other wellness practices as a way of dealing with feelings that no one would talk about, as a way of self-treating PTSD that no one saw or knew how to deal with, as a way of caring for yourself through cancer or an anxiety disorder or a major surgery or a terrible heartache, when everything doctors & therapists & family said or did for you was necessary according to someone, but not so helpful for you, then we are on the same team. You went to your body and your heart for answers instead. You shut the door to everything but a radical, intimate relationship with yourself and what was real. In my writing and my practice I am in a process of distancing myself further from mainstream yoga and speaking directly to my own people.
My people are not the acrobats and the ballerinas and the gymnasts who came to yoga as a way to strut their stuff. I am not writing for those who still believe that yoga and meditation can fix them. They are doing something that looks like spirituality from far away, but getting close up, what their practice looks like is a deliberate and meticulous daily effort to erase the so-called flaws of the body, and to melt away pain in a hot yoga studio, to zero in on an image of what white, Western society considers to be “perfect”. I spent some time in those kind of wellness spaces because they were the spaces that were around me. It is unfortunate that some of the teachers I learned from and admired, along with their time and care, shared with me messages that my chronic illness was somehow based in a spiritual flaw that I could fix with positivity and daily practice. Along with a studied attention to correcting postures to move them closer to “right”, these teachers betrayed that they possessed a well-practiced blindness when it came to seeing what was wrong with me: my physical deformity and my chronic pain.
This November it will have been 10 years since the pain in my feet was diagnosed as a chronic and degenerative disorder. It was diagnosed by a surgeon who took one look at my feet and immediately knew that the damage to my bones & tissues was severe and irreversible. No one had bothered to look before. I have been experiencing pain in my joints and other symptoms since I was 12 years old. These days I am feeling symptoms that are unfamiliar to me: trouble breathing, lung constriction, and pain in 6 or more major joints at the same time. This is not normal for me. I am 99% sure that I had Covid-19 earlier this year, so it is possible that Covid could be why I am in pain right now. Regardless of the cause, it has turned out to be the case every year now for the last few years that my pain has gotten worse, and it has stuck around for months on end like a weird storm cloud that lets you know something is off with the local climate - an impending tornado? a forest fire darkening the atmosphere? - the pain changes shape, it broods, it rains, it gets complicated and changes color, it moves around, and it refuses to dissipate.
Autoimmune disorders, by nature, mean that the systems in the body responds irrationally to external stimuli. A toothache, a cleaning product, a burrito, an emotional trauma, environmental pollution, coffee, stevia, a bug bite, a common cold — any and all of these things can set off my illness. After all this time pain can still blindsight me, which may have to do with the fact that after all this time dealing with pain, I am still young. How can it be that I spent the weekend waking early for hikes (twice!), floating the river, celebrating summer with friends, staying up late, and hosting a workshop… only to wake up on Monday unable to concentrate, stuck in a brain fog, hurting all over, and unable to digest much besides Kitchari (meaning mixture, a slow-cooked grain porridge with Ayurvedic spices)? Living through a pandemic, I have noticed that one thing has changed in how I deal with these episodes of heightened symptoms in a way that brings some ease: when I am sick I no longer feel like the world is against me. I know that I am not the only one stuck at home suffering.
There is so much sickness on our earth, in our bodies, in governments and systems, and in our ways of being. I take some kind of solace in knowing that my illness is one little pinpoint in a huge mess of loss and pain. Pain brings me closer to others rather than out and away. I practice being in a deep presence with what’s happening in our world. I have been training for this for years! Friends have been offering to help me, and I am taking a look at myself and realizing how hard it is for me to ask or accept any kind of help. When I had all the symptoms of Covid-19 earlier this summer that was clearcut for me. I knew what I needed. Within hours of developing a high fever I texted about a dozen friends: “Here is what I need. I need gallon jugs of water to keep in my room. I need fresh, organic food that I can eat without preparing: all gluten-free, no grains, no sugar. As many vegetables as possible, maybe juice? I am going to need help with Kaya (my Belgian Shepherd). I don’t have any food for her right now either. And does anyone have a thermometer?” I did not know how long my Covid symptoms would last, but I did know that if it was not going to full on kill me, then it was temporary.
If there was an indie movie about my life starring and directed by me, I think I would start it with a montage of me sitting silently through a series of work meetings & friend gatherings over the course of 10 years, suppressing some sadness and jealousy as I watch other people get better from: hip surgeries, mysterious illnesses, broken legs, knee surgeries, heart attacks, and even broken pelvises. Then there could be shots of my face wondering how to react when, a day or two after getting really sick with autoimmune symptoms, people ask me: “Are you feeling better?” What to say? For me is has become normalized that I won’t be feeling better. For me the marvels of modern medicine have fallen far short of providing a cure. My baseline is less than well.
On top of that, part of what I was taught by family and doctors when I was diagnosed was that, in order to stay in the workforce and stay healthy, I was going to have to do backflips and somehow fit it time to run a lifelong gauntlet of extensive personal efforts to keep myself well, while at the same time hiding most of this from others because it would not bode well with employers or really anyone. It certainly was not a topic for a meeting or a dinner conversation or a night out with friends to say: “No, I’m not feeling better, and I don’t even know if it is reasonable or helpful for me to expect that I will. I am working on accepting pain, and relinquishing my sense of control over my own body because when it comes down to it that’s the only way I can live.” If you go to meetings and dinners like that, please invite me into the fray.
I do have incredible friends, and I live in a beautiful, kind, supportive community. I am sharing some thoughts on how others can support me through my illness because pushing other people away and refusing offers for help is never a good idea. This is an experiment. The landscape, rules, and strategies of living with chronic illness change daily, so I probably will not feel the same tomorrow, and my needs may be different. Here it goes:
Don’t ask me if I’m feeling better. Think twice about asking me how I’m feeling. It can be hard to answer these questions. Think: Are you prepared to listen? Is there time for her to answer? In this moment, is she going to want to explain?
Resist any urge, when I’m talking about pain, to say: “Maybe it’s just… {insert comment that minimizes the severity of my pain]. Remember that I know myself, and I know the medical system all to well, so I have probably done my research. I am forced to.
Let me know that a low-key hangout, like making dinner, going for a walk, sitting in the park, or having tea, would be a nice way to connect. Some people are always moving to fast through life, and when I need a slower pace they leave me behind.
Gift me tinctures and teas made for cleansing. There are remedies for general system support, for nerves and pain, for sleep, for emotional healing, or for all other kinds of specific uses. These are especially beautiful gifts when they are locally made. On top of the medicinal benefits that herbal remedies provide, I have found that there is something comforting about putting remedies into the body. It’s a quick, easy ritual of healing!
CBD products or any kind of mushroom medicine are helpful for all kinds of symptoms connected to the nervous system and to the immune system. Again, as stated above, these are such beautiful offerings often made with care my dedicated healers, and are gifts from nature, so they feel special!
Let me know that you won’t forget about me while I’m resting at home, even if it turns out that I’m resting at home for months. Don’t stop inviting for me rad adventures just because I’m not always 100%. When I am feeling well, I can keep up with you, and I could probably surprise you as to how strong and healthy I am much of the time. I still want to push myself, to spend time in the wilderness, and to learn new things, too. I am not my grandmother, yet.
Venmo me (or anyone else who needs it!) small amounts of money to use towards acupuncture, counseling, craniosacral treatments, physical therapy, or other therapeutic treatments. This is a long haul, and it’s an expensive one.
Think about it very, very carefully before you suggest some remedy or miracle cure that you read about on the Internet. Before you tell me what I should be doing for myself, ask me what I’m already doing, and what I’ve done. Chances are I’ve tried most of it.
I am grateful for all that illness has been teaching me. I hope that some of this advice applies well to helping others who are dealing with grief, chronic pain, a major illness, or any kind of longterm healing process. The definition of pain is multifaceted, meaning that physical and emotional pain are inextricably connected. Being okay with what is unclear, and sticking around, and shifting, is a skill to practice. We could all do well from accepting that pain is not ‘supposed to’ go away.