No, You Didn't Give Yourself AxSpa or AS
I hear a lot of people saying that they feel they're in some way responsible for their chronic illness (like this MultipleSclerosis.net writer), as if they did something wrong — or didn't do something enough (like eating "right"). To make it worse, some not-so-great doctors — those who don't investigate a disease enough, or doctors who say a patient just needs to "work out more," — perpetuate this patient self-blame. If your doctors reduce your symptoms or simplify your disease, you probably are going to walk away thinking you're "crazy" or not doing enough for your health.
Society doesn't help. When you've got a family member saying, "You're too stressed, you're gonna make yourself sick" or a judgemental 'wellness' influencer saying "I meditated my illness away," you start to second-guess yourself. Also, no one — no one, I reiterate — meditates their illness away. Sorry not sorry.
I have had thoughts like that
But hey, I'll totally admit that I've had thoughts like these. In college, I worked at Starbucks and would make myself all sorts of wild drinks. Half and half lattes (gross — I know, believe me). Sweet syrup. All of it. I started having gut issues, and then the chronic AS-related uveitis started a bit after that. I wondered to myself: Did I do this? Did I trigger some sort of gut issue that unlocked AS?
When I complained of excessive fatigue, a doctor told me I "just very unhealthy." She wrote me a list of good foods to eat. She told me to workout more. She told me to go to bed earlier and at the same time every single day. But I was a poor graduate student and worked all the time when I wasn't in late nighttime classes. Eating great and sleeping more wasn't always feasible, but then again, I didn't exactly make my health a priority. I was young, busy, clueless, and had the privilege of always being a healthy person, which meant changing my lifestyle felt difficult to me.
And so, I wondered, when it became clear that I had AxSpa (and later AS) that there was some evidence that AS is triggered by gut issues, if my years of eating whatever I wanted to 'gave me' AS.
But here's the thing...
Even if something 'triggered' the AS, it was in me all along. It was a physical destiny of sorts. I was HLA-B27 positive (not that it's a guarantee for AS, but an associated risk). My father, aunt, and possibly my grandmother all had or have it. And it was bound to appear. I even did a DNA health test which showed an increased risk of AS. I was born this way. Everyone has something they're predisposed to or something they will get.
Self-blame is pointless, mean, and reductive. First, let's say a person did eat bad food or [insert bad behavior], might there be reasons they didn't eat well? Perhaps they were coping with trauma? Maybe they had no access to better food? Maybe they were not educated on the importance of exercise? Maybe they were working and too busy? Would you blame them then?
It's a pointless exercise
It's pointless because all human bodies are infallible. Our genetic code is something mostly out of our control. Our bodies were never meant to last forever, to not get sick. We carry ancestral diseases. We get sick from our environments. We are different to the next person. And that's okay. We very much mostly cannot control most of the things we get sick with — especially chronic diseases tied to genetic predispositions and markers.
And I don't need to tell you why it's mean. If you're blaming yourself, stop. You probably wouldn't blame someone else, right? You probably wouldn't tell someone they got sick because they weren't good enough, working out enough, or being better. So don't do it to yourself. Illness has a lot of complicating factors — socioeconomic, racial, and psychological.
So, these thoughts might come up. Sure, okay, it's normal. And if they do, let them pass. Be self-compassionate. Be kind. And know that blame it's a pointless game that gets you nowhere.
Does reading AxSpA patient stories help you in your journey?