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.
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.
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:
- AS affects everyone differently
- AS never goes away
- AS is largely invisible
- AS is difficult to pronounce and largely unheard of, yet not rare
- AS can be inherited, but no one knows how
- AS is often treated with high-risk drug therapies, but there isn’t one standard treatment for every single person with the disease
- Medical bills and insurance complications are a new, stressful norm
- 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 Amazon.com 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.