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? We reached out on Social Media and to people within our community to get some firsthand perspectives. 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
“Your back pain is not the same as my back pain (so, don’t give me advice).”
AS is not just arthritis, and it’s not just back pain. People with AS say that when others give them advice about how they can manage their pain, it is incredibly frustrating.
“AS is so much more than just arthritis and affects so much more than my back. I get fevers, fatigue, and muscle spasms in addition to nerve pain and inflammation all over my body.”- Anonymous
“My least favorite comment has to be, ‘Oh yeah, I have back issues too.’ It’s much more than ‘back issues’ or ‘arthritis’.”- Heather
“When I explain AS to some people, the two responses that bother me the most are: ‘oh, I have a bad back too’ and ‘Sucks getting old, huh?’. The first one is equating a few strained muscles with a debilitating, degenerative, life-long chronic pain disease, and the second one is willful ignorance after I have explained that it is not a disease of old age.”- Suzanne
“When you say it’s like arthritis, people think ‘old people’ and ‘get over it’. They don’t realize the loss of flexibility and energy- Liz
“Meaning well, they say things along the lines of, ‘oh you are too young’ and the sort. Another one of my favorites is, ‘My back hurts too, you know!’.”- Anonymous
“I love being told to stand up straight as if you would choose to walk bent over like this! Everyone always has suggestions, be it supplements, exercises, etc. That works for their arthritis or aches [so they think it] will make me all better!”- Anonymous
“I am not just being sensitive.”
Many people with AS say that they get strange looks, eye rolls, and even laughs from other people when they talk about AS, ask for help, or use a handicapped spot in the parking lot. But just know, people with AS are not being overly sensitive. Their pain threshold is probably a lot higher than the average person’s and they are still in severe pain.
“I get out of my vehicle with my permanent handicap plate and people look. I have just gotten to the point where I don’t care what others think. I know me. I know my disease. I know what I go through every damn day.”- Anonymous
“We are not exaggerating when we say ‘I’m in so much pain I think I’m dying!’ and no it is not the same as when you broke your arm or sprained your ankle or got a shot in your knee. This is all over and this is forever!”- Anonymous
“People seem to get shocked that I have a handicap placard at 34 years old.”- Emily
“The famous question: ‘what did you do to yourself’ when they see me stooped over, limping, walking with my cane or walker or in a wheelchair.”- Minionette
There’s a quote that floats around social media that feels particularly poignant when it comes to life with Ankylosing Spondylitis and other chronic conditions:
“Be kind, for everyone you meet is fighting a hard battle.” – unknown
The truth is we don’t always know what others are going through. We can hear about someone else’s pain and try to relate, but sometimes that just isn’t possible, and that’s ok. The best we can do is to listen and support others with empathy and without judgment. Listening helps to make every battle a little easier to fight.