Top 5 Things I've Learned As An AS Patient
Last updated: February 2022
Over the past few years, I've learned a lot about what it means to have ankylosing spondylitis. When I was first diagnosed, I lived in this hazy fever dream. I was grieving for my body, for my past. I felt as though my whole life had led up to this point, a point of disease, a point of vulnerability. I joined a a few AxSpa/AS groups, and met a friend who was willing to talk with me through my feelings. She held space for my grief and explained that she understood everything I was going through.
The sadness — and realization that I'd need medication, that this could be (and would be!) degenerative really rotted me from the inside out. But things have changed since that day. My body may be in pain — and things get so, so hard from time to time — but I've learned a few things, and I'd like to pass them on.
Movement really is medicine, even on the hard days
A rheumatologist once told to me move every day — on the good days, and especially on the bad ones. That tripped me up at first, but AS requires a tricky balance of both rest and activity. Over time, I grew to understand this.
On good days, I walk, workout, stretch, do yoga, or dance. On bad days, I make a point to get up, move around when and how I can (it can be slow and gentle, of course), and to not let my body get too stiff. I build this into my flare-ups and keeps me from turning to stone. The only thing? Don't move so much that you hurt yourself or prolong the flare.
Saying no is a form of self reclamation
I used to fear missing out (FOMO), but I've almost entirely gotten rid of that impulse. These days, tending to my body, mind, and spirit is of utmost importance. When I hurt my body by ignoring it or pressing it, it responds by making my life a living hell — and who wants that?
I want peace, control, and hope. And I can only achieve this if I take action. Sometimes this means missing out, saying no, and knowing your limits. I highly encourage asking yourself, "Is this worth my energy, pain, or sorrow?" If the answer is no, it's not for you. But you have to be fully honest with yourself.
Grief is not linear and often goes backwards
I used to think there'd be a day where AS wouldn't make me feel sad anymore. I'd be wiser, stronger, more in the know, right? The human heart, however, doesn't work like that. We feel things in a nonlinear fashion. There will be days when you feel acceptance and strength, and then there will be days when you roll right back into denial, thinking, "why me?" or "this just cannot be my life." You are not weird, wrong, weak, or crazy. This is human.
You still need pleasure in life, but moderate it
I know I said that you have to ask yourself, "Is this worth my energy, pain, or sorrow?" I also believe in asking myself, "Is this worth doing because it will bring my joy, comfort, and fun?" — and sometimes the answer is yes. Sometimes I need a night out. Sometimes I want to eat all the cheese. Sometimes I pay for it, yes. But sometimes I decide I want to. This is a choice only you can make.
You know your body and circumstance. I have found that limiting my world out of fear and anxiety only makes it all so much worse, so I strive for healthy and congnizant moderation.
Stress management is everything
The stress-pain connection is so very, very, very real. It's my main trigger, and one that I'm hyper vigilant about. Life is stressful, so I make sure to manage it with sleep, movement, meditation, removing myself from stressful situations, smart planning, and pleasure. What helps you destress daily?
Have you ever had to take a leave of absence from work due to your symptoms?
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