I’ve always thought that living with a chronic illness is akin to performing an elaborate dance while looking in the mirror. Like Black Swan, my reflection moves out of step, sneaking along, and yet—she is me, and I am her. This is my body moving out of its own alignment. These are my selves splitting down the middle.
We are all split down the middle, and naturally, spines are our equators. My equator is imperfect; on either side exists a different sort of world. Half of me is healthy, mobile, free. That is the older, before-diagnosis me.
The other half is its dark twin.
I have a chronic, inflammatory spinal disease called Ankylosing Spondylitis (AS).It affects my spine, joints, my digestive system, my eyes, my skin (psoriasis) and it can affect the heart. That’s because it’s all inflammatory—it’s the body attacking itself. I have had symptoms since I was about 24, but I wasn’t diagnosed until I was 31. My father has it as well.
My body wants desperately, hungrily, to grow bone where only soft tissue should be growing, especially between my vertebrae. I am putting myself into a coffin. I am burying myself alive, and there is no bell to ring to let anyone know.
In time, I may be stone.
Like many people living with chronic illness, self-care is key. Our rituals may be different depending on the disease but once you fall ill, you do start to put in the work, not only with keeping doctors appointments and taking medicine but researching and performing holistic and more intangible treatments, too.
On Suggesting Cures or Blaming & Shaming The Sick
This brings me to my point: If you have a chronic illness, you likely know the barrage of ‘suggestions’ you get from strangers (and sometimes friends). These can be frustrating.
Unsolicited but well-intentioned, these folks usually suggest something that is either painfully obvious (“Have you tried yoga?”) or hasn’t the least bit to do with your actual disease or actually could be bad for you. Because they don’t know what they’re talking about. Throwing around keywords like, ‘chronic pain’ or ‘inflammation’ does not an expert make.
Most of the suggestions I’ve gotten have little, if any, studies to suggest they actually work for AS—or any other chronic illness. Some of the suggestions are semi-useful, maybe, while others are downright insulting: “Did you exercise your childhood demons?”
From DNA activation meditations to EFT tapping to swimming in ice cold water to wearing certain herb necklaces, I’ve been told to try it all. I’ve tried a lot of it. It’s not that I find the suggestions entirely terrible, or that they won’t help at all—it’s more that people offer them up mindlessly, without medical, psychological, or spiritual context.
It’s mostly that they feel reductive.
What if your suggestion ignores a person’s culture, spiritual practice, or previous attempts at care? What if I’ve already worked on my ‘childhood demons’ and your suggestion comes off crass and reductive?
What if you bothered to assume I’ve covered the basics with my doctor?
What if I can’t afford what you’re suggesting?
These also usually seem to bill their suggestion as THE CURE, or they imply that if only I would have just done better, been better, been more invested in myself, been more spiritually sound—that I would not be sick.
There’s a difference between ideating around personal rituals and offering up fixes.
The fact is, sickness can seem to worsen when we don’t care for ourselves holistically (meaning emotionally, psychologically and physically), but people who are suffering aren’t to blame for something that is either genetic or largely out of their control.
Believe it or not, loads of people who have worked out their traumas still get sick; and guess what? If we’re already dealing with trauma (or whatever the case may be), why carry on with the implication that we’re not caring for ourselves enough? I wish more people understood this implication when offering advice.
The point is: unless you’re a qualified specialist or practitioner with knowledge of a specific disease, you really have no business giving medical or spiritual advice.
The chronically ill are already dealing with more than you can imagine—their actual illness, making doctor’s appointments, managing the side effects of meds, and trying to balance work, relationships, and our relationships.
Integrating The Holistic & The Conventional
There are many things I do as an AS patient. For one, I keep fighting against immobility. I keep walking, keep stretching, keep waking the body up before it settles into a fixed position. I manage stress, I rid myself of actual and proverbial toxins, and I keep my space and energy clear. Anyone sick knows stress doubles symptoms.
I turn to a mixture of ‘conventional’ meds***—those that my doctors and I agree upon together within the whole entire context of my health and lifestyle, as well as exercise, an anti inflammatory diet, and holistic or alternative healing methods, like meditation and magical practices—usually utilizing journaling, spellwork, creative visualization, archetype and shadow work, and crystal healing.
These alternative methods do a few things for me: They empower me to take an active role in my wellbeing. In addition to what I’m doing for my body (medicine and exercise), I’m also taking care of my mental wellbeing. Our mental health is a direct line to our bodies; the two aren’t separate. When I go dark—when I quit, when I give in to the doubt and the apathy, I can feel it in my body. Pain seems to worsen.
When I take the time to be in conversation with myself, when I honor my feelings, I grow more capable of managing my limitations—more capable of taking care of myself, showing up to my medical appointments, and making the healthy choices for my body. The effects of holistic self-love are tangible.
For example, I view AS very much as a root chakra-associated illness; it originates in the sacroiliac joints, right at the base of my spine, and so I like to use crystals and Chakrubs that associate with the root chakra.
However, I don’t believe that healing my chakra will heal the disease, sadly (although perhaps some folks would disagree), as my disease is genetic, but I do believe that focusing on this energy center in my body—sending it extra love and care—energetically shifts my mental and physical state. Being present, being loving to myself, and being deliberate with my body helps me reconnect with it when it’s become a foreign and complicated thing.
We should all be allowed to view our bodies (and our burdens) in a way that makes sense to us, without interjections from people who don’t know the labyrinthine lives we lead.
Ideas Around Offering Help
Why not try modifying your language when helping? Some ideas: “I’m sure you have your go-tos on hand, but I’ve heard X can be useful when dealing with chronic pain. Maybe it could work for you?” or “This may or may not work for you, and maybe you tried it already, but I tried X for my X, and I was able to get a better night’s sleep. It would be so great if you were able to sleep better!” In this way, you’re offering up support, as well as the chance for your remedy to be actually considered rather than jumping into the Savior Without A Fucking Clue seat.
It’s important to me that people with chronic illness know that it’s up to themselves to choose the various healing methods that work—and to not feel ashamed of those very personal choices.
It is natural to gravitate to those things that bring you comfort in your healing processes, like reiki or visualization or crystals. These are such special, natural forms of healing. It’s also okay to use medicines created a laboratory.
When we talk to one another about how we choose to heal, it’s important that, like in anything, we get the whole picture before sharing, and that we get permission before we do. Inundating someone with your thoughts isn’t always appreciated, and operating under the idea that one thing will work for everyone is irresponsible.
Our bodies all contain beautiful, unique engines.
They all require different nourishments, and they all run on different wavelengths.
Let’s treat let them like the wild, gorgeous beasts they are—with respect and empathy and unique care.
Note: I don’t love the term conventional, because it has undertones of racism and classism, it’s reductive to folk remedies, and it’s neglectful of giving credit to the cultures and peoples who discovered the ingredients to many of the medicines we call ‘conventional’ today.
On top of this, conventional medicines are often hard or impossible to access to people without insurance or the proper resources. This is where whole swaths of humankind have turned to natural and functional medicine. And while science might not verify these methods, the anecdotal evidence is there for many.
For the purposes of this article, I use this term loosely.