Impressive. Most impressive. But, you are not a Jedi yet...
-----------Darth Vader spoken to Luke Skywalker in their first battle.
"Dual spondylitis and RA warrior" are the words I use to describe my experience with pain, RA, and Ankylosing Spondylitis (AS). I rarely describe the stiffness, fatigue, brain fog, pain, tenderness, or swelling. These words fall flat and they do very little to actually communicate my experience of RA. The truth is there is no way to know what I feel, nor is there any way for me to know what you feel. Pain is a solitary sensory experience, with an assumption of shared components. Although I find that words fail to express the sensory experiences, they can creatively and meaningfully express what it is like to live with RA.
My word choice is purposeful. The words I use to describe myself, my health, my coping, all have a direct physiological effect on me. What I say becomes what I am feeling. When I say "warrior" I feel myself stand taller, feel stronger, and more masterful. If I say, " it sucks, I can't stand the meds..." I can literally feel my energy fade, I feel myself shrink, the anger and resentment grow, while the RA/AS beast gains power over me. This becomes a battle - a battle between a dark reality (RA/AS does suck!) and empowerment (I can kick this dual RA/AS in the ass).
In the middle of the battle for accurate word choice is the fact that my words can also engage self loathing (I can spiral into hating my RA/AS, feeling like it is really beating me up, berating myself for not being tougher, for being weak...) or my words can engage self-compassion (noting reality that the RA/AS is tough, that I am struggling, but I am also working on it and that is strength, it's okay to rest, the RA/AS is activating my immune system like the flu, it means it's time for self care). I know I need a heavy dose of self compassion on a regular basis. As a health care provider who also has pain and autoimmunities, I am often looked to as a role model of self care. The pressure I put on myself intensifies as I get more involved in pain, in patient advocacy, and identify more strongly with my preferred term of "pain geek." I've got great skills, and yes, I practice pain relief skills that have done a good job of overcoming the daily pain intensity. The problem is that I am human. I often fall short of my own expectations. In times like those I need to practice even more self compassion to overcome the natural tendency to feel like a failure.
So the problem in describing how I experience RA/AS is that it contains concepts that have opposing effects on my biology.
There are few simple answers in life, and rarely universal answers. It seems to me that the only way to reconcile all of this is to no longer go back-and-forth flipping the coin. I need to simply hold the coin and be present with both sides of it at the same time. This is called a dialectic. This dialectic is holding is holding both concepts of defiance against the pain and compassion towards the self. By holding both of these I find peace. I do not have to give into the RA/AS, I do not have to choose between fighting and giving in. I can work to defy it, but I must also simultaneously engage self-compassion. By using the words of warrior and defiance, the inference is made that there is a dark reality present, but as a warrior I hold some power. As a warrior I have chosen to fight. Sometimes I fight with powerful skills, sometimes with powerful medications, sometimes I fight by resting, and sometimes I fight by showing myself kindness.
To be a good warrior I must acknowledge the reality. If I deny the reality, engage in wishful thinking, or self-pity, I cannot help myself. If I gave in to it, I make it the master over me. When it becomes the master over me, I also cannot help myself. Using the concept of dialectic with defiance and self-compassion means that I can be kind towards myself while in battle with the RA/AS.
The words I use for coping have as much effect on me as my words for the RA/AS experience. The type of coping I do I call "Mastering Pain." I am not fond of the term "management." Management sounds like drudgery to me whereas, "mastering" sounds empowering to me. Further mastering is an active verb. I believe we are always working towards being masterful, but I am hesitant to ever call myself a Master, as if I had learned everything there is to learn.
"Impressive. Most impressive. But you are not a Jedi yet." In his first battle with Darth Vader, Luke was headstrong and believed too strongly in his abilities. He was impulsive and gave into his emotional state. He was not a Jedi yet. I am, like all of us, working on mastering this pain. I am building my skills, adjusting to the changing symptoms, anatomy, and abilities that a person with RA/AS faces. I am not a Master yet. There is always more to learn.
Earlier I said that pain is a solitary sensory experience. While the sensations cannot be shared, we do share the same battle. And in that battle we are not alone! We are a large community of people who have pain, have RA, have AS, have any other pain-causing invisible illness. We. Are. Not. Alone. We are spoonies. We are warriors!