Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?


First of all, what is Ankylosing Spondylitis (AS)?

Wait, how do you even pronounce it?

Ankylosing Spondylitis (An-kee-low-sing Spon-dih-ly-tuss) is a disease that causes inflammation throughout the body, especially in the spine and low back, and can cause bone spurs to fuse joints together, typically in the spine. As you can imagine, extra bone growing in your body that’s not supposed to be there can be quite painful. Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more.

AS is generally treated by a specialist doctor called a rheumatologist. The clinical treatment recommended to slow down the progression of AS, as stated in the 2015 AS treatment guidelines published by the American College of Rheumatology, is a biologic drug if non-steroidal anti-inflammatory drugs fail (my understanding is that a combination of therapies is common, both pharmacological and complementary). A biologic is a specialty drug made from living cells (biologically, rather than chemically) that, in short, suppresses the immune system. In ankylosing spondylitis, the body constantly attacks itself, seemingly without a real danger present, which causes inflammation and damage. The biologic drugs slow that reaction but in doing so also decrease the body’s ability to fight infection. You can read more about how autoimmune vs auto-inflammatory diseases work here (hint: AS isn’t proven to be autoimmune).

So now that you know a teeny bit more about AS imagine you are the one who was just diagnosed with it.

Scary, huh?

Congratulations are in order simply because you are reading this blog post. It’s difficult to believe, but I often hear from people whose family and friends shun them for “faking being sick.” These same family and friends often don’t make an effort to learn what their loved one is actually experiencing. So thank goodness you believe your friend and want to learn more.

Since I’m someone living with the disease I’ll share what I can that may be helpful. I am not a doctor, so let’s be clear that I am not giving medical advice.

Now what?

Should you run and hide?

Should you tell them what cures & treatments you’ve heard of?

What does this mean for your friendship? What does this mean for your friend?

Will this be hard? Will they die?

Yes and no to all of the above. There are no one-size-fits-all answers.

If your friend has just learned they have this disease it can feel like a death sentence. But it can also be a relief to finally know what’s wrong after years of misdiagnoses. Their life may feel upside down. They’re battling a loss of their identity as they knew it, perhaps facing a fear of losing friends, realizing a new norm of tests and treatments and doctors, and recognizing that life will never be the same again.

First of all, it’s important to understand that your friend is going through a grieving process unpacking what it means to have a disease that will never go away. At the same time they’re doing everything they can to find physical relief from symptoms. I call this “functional helplessness,” which I experience myself: having it together enough to begin treatment and hoping something amazing will happen, all while knowing the disease will eventually progress no matter what they do.

So what the heck can you possibly do that’s actually helpful? I promise, I’m getting there…but it’s really important to understand more about this overwhelming disease. Your friend may have already begun treatment, but there is a lot of info swirling around in their brain alongside the pills they may have just started taking, and just because they’ve begun treatment doesn’t mean this is the one that will work.

If you’re wanting to be fully equipped to support them all the way you’ll need to devote a fair amount of time to understanding everything you can.

Your friend is dealing with multiple new realities all at once, including:

  1. AS affects everyone differently
  2. AS never goes away
  3. AS is largely invisible
  4. AS is difficult to pronounce and largely unheard of, yet not rare
  5. AS can be inherited, but no one knows how
  6. AS is often treated with high-risk drug therapies, but there isn’t one standard treatment for every single person with the disease
  7. Medical bills and insurance complications are a new, stressful norm
  8. Multiple doctor appointments per month may become standard

The stress of this alone is enough to pull you both apart. This can be scary, but if you both agree not to make this journey alone it may be less scary. It can also be helpful from the start to admit that you won’t always know what to do even though you’ll try.

Author Elizabeth Kübler-Ross writes about five stages of grief in her book, On Death and Dying (if you purchase this book through this link, I may receive a small commission, FYI), outlining the stages people experience after losing someone they love. Kübler-Ross originally, perhaps more fittingly, developed these stages of grief after observing patients coming to grips with terminal illness. In her book she outlines the stages of grief: denial, anger, bargaining, depression, and acceptance – but there is no correct order in which to grieve, no time limit, and no guarantee or requirement that someone will ever enter or complete all the stages.

After nearly 5 years I myself am still experiencing all the stages of grief on some level, so I’ll share some considerations from my own experience to keep in mind as you try to understand what your friend is experiencing (you’ll know your friend better than me).

Grieving the diagnosis of a chronic disease is like grieving the death our own body.

This so-called “death” of our former bodies triggers a lifelong, un-mapped trajectory of various levels of acceptance (or not) for the rest of our lives. Anyone who has lost a loved one knows it generally becomes less painful as time passes, but when we lose our bodies we still have to live inside their skin every day. We always physically feel and see that, so the grief is prolonged and more complicated.

In the case of an incurable chronic disease we experience loss for the rest of our lives and we need people to be with us through it all. We don’t get better. Perhaps we find ways to cope and maybe we stumble across a treatment that helps us achieve a notable reduction in symptoms, but there is still no cure.

Additionally, AS is progressive. That means that your friend, in addition to simply getting through today, is facing a lifelong battle with that will eventually always get worse. Today’s body will not be tomorrow’s body and so on. People who are progressively ill are faced with a glass half empty that has a slow leak in the bottom. No matter how much they pour into that glass, it is always losing something out the other end.

It is a grim fact that their health will deteriorate sooner and faster than healthy people.

With this new reality, your friend is likely freaking the f**k out. There is no cure on the horizon. “Remission” maybe, but this is just a fancy word for a pause in symptoms. A dormant disease is still something that needs monitoring. And, much like a volcano, it can erupt without warning.

Now that we’ve set the stage here are some tools to keep on hand. Everyone’s needs will be different, but it’s likely that several of these ideas will guide you in helping your friend:

1) Learn how to say Ankylosing Spondylitis. Better yet, learn how to spell it. More importantly, learn the elevator pitch. Repeat after me: “AS is an incurable inflammatory disease that can cause ongoing pain as intense as childbirth. In severe cases it can fuse my friend’s spine into a rigid column of fragile bone.”

2) Get a tattoo to raise awareness. Just kidding. Sort of…

3) Ask your friend how AS affects them mentally, physically, and socially; but be clear that they don’t have to tell you unless they’re ready and make sure they can trust you won’t judge them. The most important part is that you listen and validate what they share. It’s their story, let them tell it.

4) Continue inviting them to participate in social activities but understand plans may need to be more fluid. Keep doing the same social activities you have always done, if physically able, but be open to altering the activity, having a backup plan, rescheduling, or even cancelling. Remember, it’s not your friend who is deciding they don’t want to hang out anymore, it’s their body that often makes the decisions now. Navigating how you make plans is something for you to work through together.

5) Offer tangible support. Visit them at home and just be present. Keep them company while they make medical phone calls or pharmacy runs. Bring food over (real meals and sweets). Clean their dishes (or apartment!!). Drive them to buy groceries. Offer to go to the doctor with them. Babysit. Shop online for fancy canes together. Take their dog for a walk. Clean the litter box. Take them out to dinner. Send a care package. Rub their shoulders.

6) Do NOT offer medical advice. Period. Unless you are a doctor who is treating them for AS, or they ask you specifically for medical advice, do NOT – I repeat – do NOT suggest yoga, sex, urine, poop pills, cannabis, wheatgrass shots, anti-inflammatories, massage, chiropractic care, mindfulness, saunas, sleeping pills, or anything else. Don’t try to cure your friend. They need you to be a friend, not their doctor. Sick people try harder than you could imagine to be well, and often just want a break from being reminded about all the treatments they’ve already considered, tried, or can’t afford.

7) Pay attention to how you react to your friend’s good days and bad days. If your friend says they’re having a good day it’s probably ok to say, “Yay! You look great!”

If they’re having a really bad day, though, it can be invalidating to say, “But you look great!” In this situation it might be more appropriate to say something like, “It’s good to see you, I’m sorry today is bad,” or, “That sucks that you’re having a rough day. Do you want to talk about it or change the subject?” You may even have a friend who would appreciate, “Wow, you look like crap today!”

8) Say this: “It’s unfair that you are facing this battle for the rest of your life.”

Not this: “You’re too young to be sick.”

The first statement is a fact – it is unfair for someone to be sick forever. This statement can be validating for anyone.

The second statement is a semantic trick. While it seems innocent enough the phrase really separates people into two categories that don’t actually exist: old people, who are allowed to be sick, and young people, who aren’t allowed to be sick.

We all know incurable diseases span all ages. I hope you understand why the first statement is better.

9) Take care of yourself. People who are close to someone with AS are also affected by the disease (no, it’s not contagious). Watching someone suffer and helping support them can be draining emotionally and physically. Being part of a support community (online or in person) for caregivers can provide a space for you to share what you’re going through as well as provide support for how you can be intentional about your own self-care.

10) Join an AS support community, online or in person. Sometimes you’ll learn more about what your friend is going through by hearing stories about other people’s journeys, and if you’re part of the group with your friend it can make your friendship even stronger by sharing that safe space together. Here’s a list of patient-led support groups in the USA that are sponsored by the Spondylitis Association of America.

11) Donate to an AS patient advocacy organization. Better yet, become a member so you can be up to date on new research, treatments, and ways to raise awareness. Then, duh, raise awareness! Tell people what AS is when the opportunity arises (or you can just strike up a conversation in line at the grocery store). You can do a lot of good by advocating with, for, and on behalf of your friend. This may also win you bonus friend points. You can check out my Spondylitis Resources page for a list of International AS patient support organizations.

12) Be an ally among your own peer group. Help educate mutual friends who do not understand what your friend is going through. Be that “AS 101” buffer with other friends and loved ones so they don’t, for example, begin a conversation by suggesting treatments your friend should try. If you really want to do something big, organize a party or fundraiser with your peers to raise money either for your friend or for that nonprofit you’re now a member of.

13) Become a vocal advocate – we are ever in short supply of people with energy to call representatives to increase research funding, influence policies that support greater access to appropriate treatment, and generally help raise awareness publicly. While we’re fighting to care for our bodies it’s good to know someone’s got our back for the bigger picture. Pun intended.

Finally, it’s ok to not always know how to help your friend. It’s ok to tell them that sometimes all you can do is guess. Because, guess what? It’s guesswork for your friend too.

So, your friend’s been diagnosed? Don’t walk away. Sit down, hold their hand, and tell them you’re not going anywhere. And make sure you mean it. Because the diagnosis is just the beginning.

For more information about Ankylosing Spondylitis, I recommend checking out the Spondylitis Association of America website. This nonprofit has been my most trusted source of up-to-date information and support since my diagnosis.

If you found this post useful in some way, please consider supporting my work with a $3 tip at Your support will help me keep the lights on and make me smile.

28 thoughts on “Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?”

  1. BeingCharis… I Love You… You have single-handedly described in two Blogs, what I experience in AS, what I experience in friendships (negatively I might add). I find my self smiling at you, because it could not have been written any better. I find myself hoping that my friends and family would read the blogs that I have posted on facebook… but anywho I am extremely grateful for showing me “that someone knows”, regretfully as I wish this on no one… thank you…


    1. Ron, I’m so glad you found such connection with the two posts you read! I, too, hope your friends and family will read them – please let me know if they do and what they say, or if their actions change. One day at a time, my friend.


  2. My mom was recently diagnosed with AS and it breaks my heart seeing her in so much constant pain. We bond through exercise and outdoor activities and seeing those activities becoming less feasible for us to do together is hard for both of us. There is a big part in me that hopes we find the right treatment to hault the progression, and I am not quite ready to accept that this is unlikely. I’m not sure how to be of better help. I wish I could take her pain for her.


    1. Hi Anonymous, thank you for commenting and sharing your fears as well as hopes for your mom. This is a really hard time for both of you, and I am so glad to hear that you want to help – I know it’s hard to not know what to do, which happens so often for both people living with the disease as well as their loved ones. It’s important to keep learning and to keep validating your mom, and also to recognize what’s going in in your own mind – you deserve support through this too! I hope you’ll keep me updated about your journey through this. One day at a time.


  3. I have AS too. Last night someone at a bar told me “your back is really f*ed up” It was very painful. My back is not ‘f*ed up,’ I have a spinal deformity from an illness, and can’t help it. Why does my back have to be the first, and in many cases, ONLY, thing people notice about me? Why can’t people be more educated about AS, and stop offering their rude comments and unsolicited advice about food, yoga, posture, medical marijuana, their friend that “had AS and ‘magically’ cured themselves with diet or Bikram yoga,” even the amount of weight in my purse!?!?! It’s annoying. AS needs better press.


    1. Laura, what an awful experience that sounds like! I’m so sorry that happened. Indeed, I heartily agree that AS needs better press; especially about all the ways it can affect people. It’s great that Dan Reynolds is open about it, and Zach Kornfeld, but we also need coverage of people with AS who aren’t able to tackle it with exercise and who are severely impacted by it, like you and me. I’m doing my best to help expand our reach, but it takes all of us to share our stories. ❤


  4. I Love this so much. I am thinking of starting a blog about my AS so that my friends and loved ones understand how I am feeling. I was wondering if I am able to use the quote below?
    Additionally, AS is progressive. That means that
    your friend, in addition to simply getting
    through today, is facing a lifelong battle with
    that will eventually always get worse. Today’s
    body will not be tomorrow’s body and so on.
    People who are progressively ill are faced with a
    glass half empty that has a slow leak in the
    bottom. No matter how much they pour into
    that glass, it is always losing something out the
    other end.

    In return I will include a link to this page as I think it can help so many people.


    1. Hi Sian, I’m so glad this post was/is helpful in some way. Of course you are welcome to quote me with my name and link back to my blog, as you’ve requested. I’m glad to know you are thinking of starting your own blog – keep me updated about that! – C


  5. Love this!
    I was diagnosed when I was 18 (I know that in a weird way, this makes me lucky as I know so many people can wait years and years for a diagnosis, I waited for about 10 years from very early symptoms – thanks, Dad!) and I lost all of my school friends. At the time, I resented them but now, I kinda get it, although I like to think that I might have been more mature about it.
    I think that they just didn’t know how to react; it’s such an unknown disease/condition that people sort of shrug their shoulders. I remember my best friend at the time saying: “Yeah, but you aren’t going to die from it are you?” I know, I know, it was probably an age thing but watching all of your friends drift away, go out, go to uni to start their adult lives was hard and I really wanted them to reach out, to understand. I didn’t reach out to them, mainly because I don’t like to be ‘the sick one’ and maybe I should have, but within two months of my diagnosis, I never saw them again.
    My friends now are great. I couldn’t ask for a better bunch, so maybe it wasn’t such a bad thing that my school friends left. I think I’m better off without them! I know when I did lose them though, I thought: ‘That’s it. I’m too much of a pain to bother to be friends with, what with meds, walking sticks and wheel chairs!’ But that isn’t the case.
    You win some, you lost some.
    And I definitely won!


  6. Hi Charis! Loved every sentence here and bookmarking forever. I actually found this post tonight when Googling “how to break plans with your friends Ankylosing Spondylitis”. I was diagnosed a little over 2 years ago and I still struggle and seek answers on how to best cater to my friend’s best interests and be less burdensome when it comes to my disease getting in the way of THEIR lives. This post provided a lot of much needed perspective. Thank you. The 4 guys in my core group of friends are the best people I know. We’re all in our mid 30’s and I love them to death. I know they love me back, too, which makes the constant letdowns when I cancel plans set 3 days prior, 2 hours before they’re supposed to kick off. And to make things harder on myself, as much as I want to share this with them and assign the read like homework, I know I probably won’t because I fear being perceived as self-centered and needy. I’ve been in a real mental struggle tonight more than most other times for some reason. My oldest friend and I made plans yesterday for our daughters (3 & 5 yr olds) to play after work today. Well after putting together an elaborate shelving unit for 2 hours my back was screaming at me for what I put it through. I text him 2 hours before we were supposed to meet, canceling on him and apologizing from the heart. His response was “lol”. I replied apologizing again, explaining why, even sad face emojis! ;)… no reply. I text again saying we can try again tomorrow… no reply. I know he probably sounds like an ass but he’s one of the best kinds of people that anyone would want to have in their life. He’s got a great heart, so I can’t help but feel he doesn’t believe me, like I’m playing up the disease when it’s convenient for me. It breaks my heart. I will share this with him and hope for the best.
    Thanks for always being such a great voice of clarity for me. Been following you since your interview with Dan Reynolds. You are the epitome of awesome. 🙂 MUCH LOVE!

    Liked by 1 person

    1. Thank you Scott. I’m so sorry you are struggling so much with this area of what AS can do to us.
      It’s been one of the hardest things for me to transition from being the never-do-I-ever-cancel kind of person to one who really limits what I even put on my schedule to begin with. I’ve had to learn to conserve all my energy for That One Really Important Thing I want to do so I don’t have to cancel last minute, and so I have something to look forward to. But that’s how I’ve learned to approach it…I don’t ever want to assume that’s what everyone else should also do.
      I hope you are able to talk more openly with the guys about what you’re actually going through someday. The more they learn and understand, the more awareness they’ll have that you are actually superman for surviving.


  7. Excellent job Charis!

    As one of the fortunate and blessed that, after decades of searching. has found an honest and deep acceptance as my path took me through the fully consuming nature of AS, ultimately leading to a fully fused pelvis, rib cage, and spine you have hit it out of the park with this one.

    Every person that reads this will understand so much better what they can do to give help and comfort to their loved ones dealing with AS (or any) chronic degenerative disease.

    The acceptance one searches for comes in small doses, purpose seems to be the igniter. Early it may seem a faint glimmer off in the distant light, but it will come, it must come.

    Chase the light, absorb the light, be the light.


  8. I just go to diagnosed with AS about a week ago after having severe lower back pain for 9 months. I have and still feel so misunderstood, lonely and invisible and have been looking all over the web for something for my husband to read. You are really spot on with everything and I am really greaving right now. I used to be so energetic and physically strong but now I am tired all the time. Thank you for putting the words out there. We need it.


    1. best of luck my girlfriend has had it for nine years now they said she only had 2 years but it has got her now she has 4 months left so please enjoy your life now do everything you want to please


  9. Your list of what you can do to help your sick friend is spot on – for not just AS, but other chronic illnesses as well. I need to print it out and hand it to people with well-meaning but ultimately useless “help”.


    1. I thought long and hard about just making this a blog post for friends of people with any chronic disease, but in the end I decided to focus on AS…but that definitely means a lot of it resonates with any chronic disease community!!!


  10. I am a 54 year old woman living with AS and am HLA b27 possitive.
    I have several other autoimmune diseases in conjunction.
    Thank you so much for posting your article it means so much when we see acknowledgment.
    This disease is not commonly known but has been around for a very long time, we desperately need research, funding and education about AS.
    AS is not solo there are many legs to this disease.
    So I thank you. And all my best to you!

    Liked by 1 person

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