Ankylosing Spondylitis. Life wrecker. Warrior maker.
I first remember having pain from AS when I was 11 years old. It started in one hip. Soon both hips were painful; I started having pain in my back also. Often both of my knees were swollen and painful. Sometimes I would have random bouts of severe pain in my neck, shoulders, elbows, and ankles that would last for several days. By the time I was 15 or 16, both my hips had completely fused. By this time I had long given up on doctors, they couldn’t explain my pain. They wanted to drug me up, but I refused. I shut down, sucked it up, and just survived the next several years.
For a time, I couldn’t get in and out of bed on my own, put my own pants or shoes on, or go up and down stairs by myself. It could take me minutes just to walk from one room to another. I didn’t leave the house more than 2 or 3 times a year for a few years. I made life miserable for my family. I was not the only one suffering, it affected everyone around me.
At the age of 19, I returned to doctors. Because of my fused hips, I was sent to an orthopedic hip surgeon who diagnosed me with AS in 2010. This was both good news and bad news. I had a name for my pain, but I found out that there is no cure. I found out that I was damned to live a life full of pain. I was then sent to a rheumatologist. He wanted to put me on the highest doses of the strongest meds. For many reasons, I refused treatment.
Finding out I had AS, knowing I would soon have both my hips replaced to regain motion in them, and now seeing more clearly what I would be dealing with for the rest of my life, at the age of 20, I decided I didn’t want to live anymore. I had struggled with these thoughts for most of my teenage years, but this time I had decided that I wanted to take action to end my life.
To say the least, I did not do so. As with everything else in my life, I shut out these thoughts and feelings, tried to ignore them. I, once again, became numb.
In March of 2011, I had one hip replaced and then had the other hip replaced a month later. For the first time in at least 4 years I could move my hips again. You can’t imagine what a strange feeling it is to be able to move joints that you couldn’t move for so long unless you’ve experienced it yourself.
The hip replacements didn’t “fix” me though. Because of a tilted pelvis, fused SI joints, a stooping spine, and scoliosis, I can’t stand straight. I walk much more easily now that I can move my hips, but I still don’t walk normally.
My hip surgeon advised that I look into spine surgery to attempt to straighten my spine, he didn’t know if anything could be done, but he wanted me to look into it so that I would know my options. Since then, I have seen one back surgeon who said he could not do anything to straighten my spine. For several reasons, I have not looked any further into back surgery.
At 22, I learned how to drive and got my license. I am now 23, I just finished my first semester of college and am headed back for my second semester. Simple things most young people do. But they are huge accomplishments for me. Things that I never thought I would be able to do.
When I look back at how far I’ve come, I’m not sure how I ever made it. When I look ahead at what is to come, I can’t say I have many positive thoughts. Life isn’t fair, but life with AS is even more unfair.
As a 23 year old trapped in a bent, twisted, painful body… …I struggle with life. The mental and emotional pain is often worse than the physical pain. AS has destroyed my body and attempts to destroy me. I will never live a normal life. Never. I will never escape the pain. I will never escape the stares I get from strangers when I go out.
But I keep on fighting. Why? God only knows. I try to hold onto the thought that God does have a plan for me and is going to bring some good out of my messed up life. I struggle to trust God, to trust His plan for me. I struggle to get out of bed every morning and choose to live each day. I struggle to look toward my future without feeling hopeless, without feeling like this life full of pain is pointless. I struggle to not let myself be defined by AS and the damage it has done to me.
AS changed the whole course of my life. Would I change it? If somehow I could go back and erase AS from my life, would I do it? No. I can’t even begin to tell you how much I have learned from having AS. About life. About myself. Things I could never have learned if I didn’t have AS. Although AS wrecks me, breaks me down, it has also made me a fighter, a warrior.
Everyone has struggles in their lives. AS just happens to be one of my struggles. As long as we learn from our struggles, isn’t it a battle worth fighting?
My name is Becca and I am an AS warrior. And the battle continues…
i realize as i continue this journey everything gets harder. The battle gets more intense.
Last summer i experienced the worst AS flare i’ve had since i was a teenager. It started as back spasms. As soon as that stopped, my knee swelled up larger than i’ve ever seen it. The flare ended about a month and a half later with just mostly general pain in my arm, neck, and knee. Two trips to the ER. Had to have my knee drained too.
i had forgotten what it was like to be in such severe pain. i forgot what it was like to not be able to move. i forgot what it was like to not be able to sleep until extreme exhaustion takes over for an hour or so. i literally had only four hours of sleep over three days.
i hope i never have a flare like that again. i just wanted to escape my body so bad. Unless you’ve had severe pain for a length of time, you can’t understand the way it feels to be a prisoner of your own body. For those of us with AS, this is all too familiar.
Something else familiar to us with chronic pain is the depression that often comes with it. Something that i’ve struggled with for a long time. Back in counseling now and considering meds… don’t like that idea, i refuse to treat my physical illness so why should i treat my mental illness.
In the past year i have lost a lot, but i have also gained a lot and learned a lot. i have struggled more than i think i ever have. i even gave up, but the warrior in me never lets me give up completely. i keep fighting…even when i don’t want to. Some struggles i think i will always have, but maybe i need those struggles to keep the fight in me alive.
Honestly, i never thought i would make it this far. i never saw myself making it to 24. i only dreamed of driving a car, going to college, living on my own, being accepted the way i am… Yeah, i have to fight everyday. Yeah, because of not having a single day without pain in the past decade, i’ve forgotten what its like to not have pain. But you know, some days this feels worth it. Some days i can look at this damn disease and say “fuck you, you might try to destroy me, but you make me stronger.”
Slowly but surely i am learning how to accept myself. Accept my fate. Accept the fact that i will always suffer the pain and damage caused by AS. i am slowly learning how to reach out to people and to let people in. No one should have to fight alone. Even when i feel like no one could possibly understand and i feel entirely alone, i know i’m not. i know there are so many other AS warriors out there going through this shit too. i know we can overcome. We know how to fight.
Even though i have more bad days than good, days when i just want to destroy myself and escape my body, i’m still fighting; i still refuse to let this disease control me. i’m still a warrior.
Ohio, United States of America