I am a 20-something female, and I have Ankylosing Spondylitis, a chronic autoimmune arthritic disease.
My doctor’s appointments always start with my rheumatologist asking me to rate my pain from 1 to 10 so he can tell how well my meds have been working.
More than a few times in the past, my first impulse was to say “11,” not to be overdramatic, but because the pain I was feeling so surpassed what my previous idea of what a 10 felt like. I didn’t know it was possible to feel so much pain and still be fully conscious.
I was always careful to stay away from doors because if someone jerked one open and the doorknob hit my back or my hips, I was sure I would pass out. I walked with my head down to make sure I didn’t trip on anything; if I did, I wasn’t going to be able to get up on my own. I learned to pick pens and scrunchies and other little things off the floor, and to plug appliances into sockets using my feet.
Every morning, a kind housemate would help patiently comb my hair and tie it in a neat ponytail because I couldn’t lift my arms to do it myself. Some days, getting up from bed to go to the bathroom took 10 minutes (move an inch, pause, breathe. Move another inch, pause, breathe…).
I share these details not to elicit pity. I share these because the universe gave me a front row seat to the chronic pain experience. Having been to hell and back, I feel like there is a thick haze surrounding the subject.
Ankylosing Spondylitis, like a lot of other chronic diseases, is an “invisible” illness. When I was well enough to go out but still in an incredible amount of pain, I was aware that most people looking at me would never guess that there was anything wrong. They simply assumed I was a slowpoke or had really bad posture. There were times I appeared to be either malingering or exaggerating my illness.
I was, for the most part, reticent about what I was really going through—the all-consuming nature of the physical pain, the emotional torment from being crippled so young, the mental battle I had to fight every day just to keep going, the things I came to realize—because I knew I looked normal. Healthy, even. I wasn’t walking around with a leg swollen to three times its size, and none of my bones were sticking out at an abnormal angle.
I took comfort in the words shared on forums and memoirs by other chronically ill people. In the beginning, it was a surprise even to myself that much of what they shared about their inner and outer experience of chronic illness mirrored my very own. What they felt. How they felt. The initial confusion and inevitable, “Why me?” The soul-crushing loneliness. Their fears and disappointments. The ways they coped. What they wish other people knew. How the illness ultimately changed them.
I realized my experiences and my thoughts weren’t so unique after all. We were simply at different points along the same journey.
If we were brave enough to be more outspoken about our experience to people who are watching us from the outside, things would be a lot easier for everyone involved. There would be more compassion from each other, for each other; because chronic illness doesn’t just affect those of us who suffer from it, but also the people who are with us in our illness, so very eager and wanting to be helpful, but often confused and clueless.
Let this open letter be a step in that direction. I am not the first one to say these things, and certainly won’t be the last. But I want to be part of the voice that’s out there:
We’re not asking for special treatment. We’re not even asking for pity. In fact, please don’t pity us. Instead, just hold an open, safe space for us to just be, without judgment, without demands. That means some days we will be laughing and skipping around and getting lots of things done. Other days we will be quiet; very, very tired; and maybe a little grumpy. Let that be okay.
Trust that from moment to moment, we are doing our very best. If on a given day all we do is sleep, eat, go to the bathroom, and work 30 minutes, that is our best. Let that be okay.
We will have spells of crying, insecurity and feeling utterly useless; times when we are petulant and a real pain to be around. Let that be okay. We’ll get over it.
It is very common for us to sleep 12, 14, 16 hours straight and wake up feeling like we hadn’t slept at all. Tasks that we said will get done won’t get done. Not because we don’t want to, but because physical energy is a very limited resource for us, and we ran out early. Let that be okay.
Pay attention to the look in our eyes, the language of our bodies. A lot of us are really bad at asking for help and feel guilty when we have to disrupt a gathering. When we begin to be less responsive, when we start to look spaced out, when our shoulders begin to droop, it means we’re drained and in severe pain. We need to quietly excuse ourselves and rest. Let that be okay.
Allow us to explore different modalities of healing. Conventional medicine is amazing in so many ways, but chronic illness doesn’t come and go the same way a bout of flu or pneumonia comes and goes. It’s not treatable with a few pills or even surgery. Chronic illness is like an overbearing, willful, noisy visitor who has unceremoniously plopped down beside us and announced that they have come to live with us. Forever. We’re not going to take that sitting down. Let that be okay.
Conventional medicine commands, “Tape this unwelcome visitor’s mouth shut.” Alternative medicine whispers, “Listen to the visitor. It has an important message for you.” A lot of us will slowly veer towards the path of listening for the message, even though it is the longer and more winding of the two roads, and necessarily involves a lot of trial-and-error. Let that be okay.
Please do not judge what we choose to do or not do when we are lucky enough to actually have a choice. Know that whatever we choose to do is our conscious choice, that we’ve thought about it, and that it is the choice that feels right to us. It may not make sense to you. Let that be okay.
We will become fiercely committed to self-care. We won’t eat the same foods, or read the same books, or hang out with the same people. Because we no longer have the energy for anything that doesn’t feel nourishing. We will say no a lot. On the surface, we will look selfish. Let that be okay.
Living with any kind of chronic disease forces your perspective to zoom out, like being flown to the skies by a celestial being, and there you are, looking at your small but important life, and its beautiful intersection with the billions of other equally small but important lives. It teaches you to always, always look at the bigger picture. What really matters? Is what I am doing filling me up or sapping my energy? What do I want my life to be about? Is my existence adding to the beauty or the pain of this world? We will ask all these big questions. We’ll start wanting different things. Let that be okay.
We may go back to our former lives. But more likely, we won’t. We will choose a different path, maybe a slightly different path, maybe a radically different path. But it will be one that’s more aligned with the pull of our hearts and souls. Our decisions may seem irrational. Let that be okay.
As I have mentioned in my previous article, I am much, much better now. My present pain is less than a quarter of 1% of what it used to be. On really good days I can even dance a little. And I am thankful for that.
Every. Single. Day.
But I never forget that AS is unpredictable. I could be back where I used to be when I least expect it. Or I could be doing cartwheels and running marathons, as some have been able to do.
I don’t know.
Whichever it is, I will give it my best.
Somewhere along the way, chronic illness becomes less about the pain, the inflammation, the figures on our medical chart and more about our very personal journey of exploration, discovery, growth; of seeing the perfect in the imperfect, of honoring ourselves, and learning to trust that this is not a random universe and that there is a purpose to everything. Yes, even our illness. Especially our illness.
Because in the end, chronic illness is either a slow death, or a wake-up call. And I have come to firmly believe that it is the latter.
Author: Kristine Go
Editor: Travis May