You know how you feel right after a really long flight? Aching stiffness, pain, and exhaustion from being crammed into a tiny seat where you can’t sleep comfortably. But worse, much worse. Now imagine that’s how you feel just about every day and you still have to go to work, run errands, cook, clean, and maybe even take care of a family. Welcome to life with Ankylosing Spondylitis (AS).
AS is a form of arthritis that mainly affects the spine. According to the Spondylitis Association of America, it “causes inflammation of the spinal joints that can lead to severe, chronic pain and discomfort.” AS is known to cause new spinal bone formation which leaves a person’s spine, “fused in a fixed, immobile position, sometimes creating a forward-stooped posture.” That’s not in only a few rare cases – that’s in most advanced cases.
And no, it doesn’t go away. People living with this condition do not get to stay in bed all day. In fact, some couldn’t even do that if they had a choice.
“Personally, I haven’t slept in a bed in over 10 years. I cannot lay down”- Tracy.
So what do people with AS want everyone else to know about their condition? Here’s what people had to say:
“Even though I might look fine on the outside, I am not fine on the inside.”
Most people with AS have good days and bad days, but even during good days, they still don’t feel the way that you probably feel on an average day. People with AS are often in severe pain and exhausted constantly.
“This disease causes pain and stiffness and very limited flexibility. I have lived with this illness for 30 years and it always makes me angry when people tell me that I look fine! I’m not fine, I’m in terrible pain. I’m exhausted all the time, I can’t sleep, and I can’t do most of the activities I love to do or I will suffer terribly for days after.” -Anonymous
“[I wish people knew] how painful it really is, how exhausting it is to maintain a happy exterior with all that pain for my family… I would love to be the old me again. I miss me.”- Anonymous
“It has varying degrees of symptoms for every person. It’s super painful when it’s flaring. But I may not look different at all, except I’m moving slower and I’ve been told my eyes show it.”- Anonymous
“I look young and healthy. So people look at me funny when I ask them to lift something for me or I say I can’t engage in an activity like skiing when I used to.”- Liz