Beyond Medication: Managing Axial Spondyloarthritis Holistically
When I first was diagnosed with ankylosing spondylitis, I didn’t see or read a lot about stress management. In fact, all of that seemed strangely disregarded, as though our minds and our bodies weren’t connected, as though I could just take some medication and voila — cured.
But medication sometimes doesn't work, and sometimes we need to tweak or switch medications and doses to see relief (I myself tried Humira to no response). Now, I am all for medication and traditional treatments, but that doesn’t mean alternative therapies should be disregarded or taken for granted.
Medication is one tool among many
Using medication is one tool; using it doesn’t mean you can ignore the other tools in the box. When we take medication we are taking care of a part of ourselves. But there are many other things that we can do to manage our disease. I see treatment as three-fold, and medication only squarely fits into one area:
- Mind/Spirit: Stress relief management (painting, journaling, breathwork), meditation, mindfulness, self-care rituals, spirituality, trauma recovery
- Body: Medication, healthy sleep cycles, movement/exercise, diet, herbal remedies (CBD, tea), H20
- Connection: Community, connecting with others, engaging with literature about disease, self-advocacy, healthy and engaged disease decision making
When I was first diagnosed my rheumatologist said nothing about diet, exercise, or stress management. That seems like a pretty major red-flag to me, and it speaks to the way traditional medical systems are set up.
Doctors need to talk about stress
At the time, I was working as a corporate senior editor for a major health and wellness retailer, and so I was well-versed in holistic wellness and the use of supplements, meditation, and alternative therapies in the management of chronic disease. We know, from medical journals, that stress, trauma, and a bad diet can make us sicker. We know this, yet doctors rarely bring it up.
I applied that knowledge to my own disease experience and I’m so glad that I did. But the truth is, I didn't see many others doing the same — and suffering for it.
I’m still confused when I meet other people with chronic illness who take medicine and expect it to solve all of their problems. I wish it were true. And none of that is the patient’s fault. I believe that we have been woefully misled by traditional healthcare providers to believe that if there is a problem, then we treat the symptom, not the root.
We come at it from one angle and hope for the best. For some diseases, that could be true, but chronic diseases (like AS or Lyme or fibromyalgia) are tricky, complex, and hinged on so much.
A more holistic perspective is becoming more common
Luckily, many more doctors, like functional medicine doctors, are taking a holistic route these days. They believe that any disease or symptom has a root, and getting to that root is one way of managing disease. And that the patient experience matters.
For example, there are many theories that the bacteria klebsiella may lend a hand in the disease expression of AS. That’s why so many people tackle their gut health to experience improvements in their disease. Now, that might not work for everyone, and not everyone is going to overhaul their diet, but that doesn’t mean that alternative therapies should be avoided altogether!
It's all a cycle
The body is a machine, and it has many moving parts. Everything we are is delicate, fragile, run by a complex engine. If we ignore our mental health, our bodies feel the pain. If we don’t sleep enough, we run the risk of a flare-up. If we don’t eat well, we find ourselves more fatigued. If we don’t experience joy or peace or rest, we experience brain fog. If we don’t move enough, we become stagnant. And if we become stagnant, we get depressed. It’s all a cycle.
This is why I was so surprised when diagnosed that my doctor didn’t discuss mental health care or diet any sort of alternative therapy, like hydrotherapy or yoga (both of which are beloved by some AS patients). ￼
Your body is a house with many rooms
It can be very helpful to use medication (if you chose to) — but it can also be helpful to look beyond medication, to treat your body like a house with many rooms. Each room needs tidying and attention.
There is the room of your heart, where are you experience laughter and joy, which can trigger happy hormones that help you manage your disease.
There is the room of your spirit, where you embrace pause and mindfulness, which can help you limit your stress and therefore reduce your flare-ups.
And there is the room of your body, where you move and stretch and take time out to nurture your muscles and your bones so that you can fight this disease — along with your medication.
Does reading AxSpA patient stories help you in your journey?