Send This Article To People Who Ask "What's AS?"
If you have been sent this article, it means that the person who sent it to you lives with a medical condition called ankylosing spondylitis, or AS for short. I, too, have AS, so I know it's tiring to explain what it is over and over again — especially because we’re usually asked the same questions every time. So, I’m here to take some pressure off of the friend/loved one/coworker who sent you this article and do the explaining for them! Please take the next few minutes to read this article — the person who sent it to you will appreciate it. Let’s start with the basics.
"What is AS?"
Ankylosing spondylitis (AS) is a genetic autoimmune disease that causes inflammation of the spine and other joints. “Autoimmune” basically means that our own immune systems are attacking our bodies. On top of joint pain, AS can also cause severe fatigue, eye inflammation, and other symptoms. It usually starts in the late teens and early 20s, but varies for each person. It is possible that the person who sent you this lived with AS pain for many years before being diagnosed.
"What does AS feel like?"
AS pain feels like being stabbed in the back and hips, being on fire, or being crushed in a giant vise. AS fatigue feels like walking through heavy water at all times and being weighed down with sandbags, even after a full night’s rest. Each individual describes it differently, but the point is: AS feels horrible.
"I have back pain too, so I understand, right?"
It is human instinct to try to relate our own experiences to others’, but this isn’t the time for that. The back pain from AS is very different from the back pain you might feel from sitting at a desk, sleeping on a bad mattress, or overexerting yourself in a workout. AS pain starts from the inside out and sometimes, even the strongest painkillers don’t help. It is frustrating when people compare regular back pain to ours, because regular back pain can be fixed while AS is a permanent condition.
"What can be done about AS?"
There is no cure for AS. It is a permanent and progressive condition, meaning that it will never “get better” and may in fact get worse. There are medications that can help with the symptoms, but they don’t work for everyone and often come with side effects. Because you care about the person who sent you this article, you may want to suggest ways to help the pain, like stretches or therapies you've heard about. However, please don’t do this, because it comes across as insensitive. Those of us living with AS are very aware of our pain and we are already doing everything we can to manage it. Only our doctors should provide medical advice. We understand that you want to help us find a solution, but there is no cure or fix for this chronic condition, so please accept that.
"How does AS affect this person’s life?'
Imagine living the rest of your life while having the flu and several broken bones — that’s kind of what it’s like to live with AS. Standing, sitting, and lying down can all be excruciatingly painful. Simple tasks require extra effort. This makes things like working, socializing, and household chores difficult. In some cases, people with AS are unable to work at all. The best thing you can do is be understanding if the person in your life needs to cancel plans or avoid certain activities because of their AS.
"So, the person who sent me this article is in pain every day?"
Yes. Some days, the pain is light, especially if this person is being treated by a doctor. Other days, the pain can skyrocket for no reason— this is called a “flare up”. Flare ups can last days, weeks, and even months. AS is very unpredictable, which is why the person who sent you this article may be able to go on a run one day, but be bedridden the next day.
"But… the person in my life looks healthy and happy — are they really sick?"
AS is an invisible illness. Even if someone looks and acts fine, they might be in a lot of pain. It doesn’t matter if someone is young or old, male or female, active or not — anybody can get AS. People with chronic pain are the masters of “looking okay,” even when they’re suffering.
"How can I help the person in my life who has AS?"
You may never know what it’s like to have AS, but you can be as empathetic as possible, listen, and offer support — reading this article is a great start! Every person with AS has different needs and wants from the people in their life, so be sure to listen to the person in your life and ask questions if you aren't sure. They live with a painful, unpredictable condition and need as much support as possible.
So, there — now you know what AS is. Of course, this is only a summary and there is more to learn. Ankylosingspondylitis.net has many resources to help you learn all about AS, including how you can support the person in your life. I hope this article has saved your friend/loved one/coworker some time that they would’ve spent explaining! Now that you know about the condition they live with, you can begin to support them.
Do you use the word disability to describe your AS?