The reason I don’t tell people I have an autoimmune disease
'What is ankylosing spondylitis?' It's not an easy question to answer.
If you have an invisible disease like ankylosing spondylitis (AS), as my husband, Dave, and I do, perhaps you’ve noticed that people only realize something’s wrong if you say it out loud. Sometimes I find it hard to make people understand the impact this autoimmune disease has on our daily life, probably because we look pretty normal and healthy on the outside.
A year ago, when my son was in kindergarten, I was experiencing some extra pain in my sacroiliac joints. Picking up the kids from school, I heaved their two enormous backpacks onto my shoulders while my son and daughter barreled off, hooting, to play with some friends in the school playground.
As I slowly made my way across the basketball court, avoiding colliding with the crowd of speeding 5-year-olds, the backpacks were making each step hurt more and more. Seeing my unhappy face and tortoise-like pace, another parent nicely stopped to ask if I was OK.
I paused as I thought about how to answer, and the question flashed through my mind — do I tell them I have ankylosing spondylitis, a chronic autoimmune disease?
I feel like the term “autoimmune disease” doesn’t do justice to the pain and debilitation that AS can cause. When I think of autoimmune diseases, it conjures to my mind skin conditions like the psoriasis that Kim Kardashian was diagnosed with, or perhaps digestive issues.
While chatting with Dave about my frustration in getting people to understand the severity of AS, he burst out laughing. “That’s exactly right,” he confirmed. “I can’t tell you how many people I’ve explained to that I have an autoimmune disease, and they reply, ‘What happens, do you get a sore tummy?’”
I asked Dave how he explains AS to someone quickly. “This happened just the other day when I was in the office,” he said. “One of my colleagues saw that I was standing strangely and asked if I have a shoulder issue. I said, no, I have joint disease, which is triggered by an autoimmune response.”
Sometimes, if a person doesn’t understand the damage that AS can cause, I’ve heard Dave tell the story of getting his MRI as part of his AS diagnosis. He’ll explain, “In the hospital after the MRI, the specialist asked if I’d been in a car crash, because the visible trauma to my pelvis was of that level of severity.”
Other times, in trying to describe how his AS is literally crippling him, Dave will get out his walking cane. This serves as a visual demonstration to underline the fact that when his AS symptoms are bad, he can’t even walk due to the painful joint inflammation. “Mate, sometimes I can’t bloody walk!” sums up the impact that AS can have on his life.
I don’t feel that autoimmune diseases are very well understood by our society. Perhaps this is because there are more than 100 of them, such as lupus or Hashimoto’s thyroiditis, and often there are few visible symptoms. Autoimmune diseases also present with a wide range of severity and can have shifting symptoms from one person to the next. I find autoimmune disease difficult to explain quickly, and often feel like I’m leaving people confused as to what is actually wrong with me.
Sometimes I take the time to explain AS to someone if they’re interested, because I think it’s important for more people to understand invisible disease. But suppose the situation demands a quick explanation, like having a fleeting schoolyard conversation. In that case, I’ll sum up the disease in a way I feel is easily understood and does justice to how it impacts my body.
At school that day, weighed down by backpacks, I gave the other parent a smile and chose to explain my AS in one brief sentence: “Thanks for asking if I’m OK. I’m struggling a bit because I have a disease that affects my spine and joints, and it’s flaring up today.”
How do you prefer to explain your AS to people? Please share in the comments below.
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Bravo on finding a way to deal with queries about one's health in a quick, polite, and efficient way. What strikes me most about this is the bizarre coincidence that both spouses have this relatively obscure illness! I'm curious about the order in which you each discovered this condition--and were you concerned about this doubling (?) the possibility of children inheriting AS from you? (My father had it so clearly, that's how it originates for me.)
Thanks so much for commenting, Jack! Honestly no-one could have been more surprised than me when we were both diagnosed with AS. The chances are... seemingly almost impossible. Interestingly Dave had symptoms for over a decade before me, but it took so long to get a correct diagnosis. Whereas I started getting intense symptoms after childbirth, and combined with a strong family history of AS like you, was diagnosed within a year. As you said it's hereditary, so there's certainly a chance our kids will have AS unfortunately. I think about that a lot, but I try not to burden them by talking about it too much, and hope with all my heart that we can equip them with strategies and a positive mindset, should the day come.
Great article! I think the hardest part of having AS is that it is so invisible to others. Even with my husband, there are many times, even after years together where he asks me "what's wrong?" or "did I do something wrong?" when my face looks visibly upset. And I have to remind him, it's just my back honey - I'm in a lot of pain. It's hard for anyone that has AS to have to explain and re-explain, even to people who are close to you, that you have AS and don't feel well. Or that you just don't have the ability to do something that you already committed to doing. It's even harder to when you judge yourself after years, still holding yourself to the capability level of a normal person who feels good 99% of the time.
I hope that this is helpful to others, but I never say anything about an auto-immune disease. It's just too hard for people to understand. Instead, I say "I have a disease called Ankylosing Spondylitis - It's chronic inflammation of the spine and its very painful". I think that the word "Spondylitis" helps people immediately think of the spine. So, it makes sense that they immediately know you have a problem with your back. I have found that to be very direct and to the point and people "get it". I used to minimize. We all have a tendency to do that. Because we live in a world that tells you not to feel sorry or to draw attention to yourself. After years of therapy focused on pain management, I finally realized that keeping it real is key to setting you free. If you are reading this, you are like me and either have AS or love someone that does. The reality is, we have a very painful disease. And letting people know that, straight away - gives them the knowledge they need to understand that we live a life that includes pain. It is what it is, and I think people appreciate a straight answer. One other tip that I have used is a parallel with Rheumatoid Arthritis. Why? Because everybody knows what that is! So, I've often said "You know how some people have Rheumatoid Arthritis? Well, I have that in my back". And people usually then give you an "ouch" face. And what's key is accepting that that's okay! The more people around you know about you, the easier life gets! I'm no longer embarrassed about it, in fact I am proud. Because I am speaking my truth and educating people at the same time. I think we all have to be on a mission to give AS the attention that it needs! Stay happy and healthy friends!
Oh my goodness I agree with everything you said! What a great message to share. The more we can talk about AS, the better our loved ones and community can understand. I think many people with invisible pain are used to hiding it, and it can be a bit scary to feel 'compromised' by being honest, but accepting yourself just the way you are is indeed so freeing. Thank you!
The general decision of when to mention I have an autoimmune disease or not comes up regularly, and I think I now yield most control to my experienced subconscious. There's probably a slight difference of us between being younger or older in how others respond. For whatever reason, for me, the issues of pain rarely comes up when it's a more of a stranger I'm talking too. But it's probably because I don't look like I can't do something physical, and mostly I can. Although before I started a biologic, I could be half ok for period, and then be a basket case for a couple days. I certainly didn't feel like talking about anything then, and I said as little as possible. Very rarely does someone know anything at all about AS - I had never heard it. The usual basic description of AS can be misleading and confusing and we don't want to be explaining it in our own words all the time. Explaining autoimmune diseases is a little better but I agree, a lot of people have misconceptions that we cannot readily improve. It isn't selfish to keep it to yourself in many situations, rather how we feel needs to dictate.
Hi George, I always enjoy your view on AS! It's such a confusing disease. I really don't blame people for not understanding - I still think I have a lot to learn about it. I might borrow your line, "disease of the spine". That's a nice short explanation!
Speaking of celebrities with AS, I watched the movie The Dirt on Netflix, which is a biopic of Mötley Crüe - the guitarist Mick Mars was famously diagnosed with AS. He has some very interesting things to say about the disease. I'll have to look up Imagine Dragons, thanks for mentioning it.
I like that Dave has a different take than me. When I think I can be productive, I do explain AS with as much detail as I can. I've done it hundreds of times.
I should mention, Jemma, that almost exactly like your short explanation: "... I have a disease that affects my spine and joints," several times I have just said, "I have a disease of the spine." It successfully sufficed for the situations. They may have been wondering what I was talking about though. A younger me hearing that might have thought scoliosis, which isn't a disease though, thankfully because I have a mild case of it.
I can probably respect anyone's choice in how forthcoming they want to be about AS, and when. A level of privacy is good thing. However, famous or "well known" people can do good when they announce being afflicted. Someone I know, who watches daytime TV, told me the lead singer of Imagine Dragons talked all about his AS on TV. I appreciated knowing that and I'm glad he shared it with the world. But who knows, in everyday life he may find it helpful to use the same succinct comments we do.