How AS Patients Can Be Better To One Another
As an AS patient, I've lived in forums and Facebook groups, attended AS support meetings and met or corresponded with all sorts of "AS influencers," if you will. We all share a common experience — AS — but we come from different backgrounds and experiences, and that's important to acknowledge. Just because we're all spoonies doesn't mean we're all on the same page, though.
From what I've noticed, the majority of AS patients and chronic illness patients are supportive, inspiring, and compassionate — and I credit them for getting me through some tough times. However, there were times that my own community let itself down. This happens all the time when able-bodied people make ableist remarks, and while fighting against that is a priority in my work as an advocate, I did feel it was important to speak up about the chronic illness community, too.
The below instances come from things I've seen directly in my work as a patient, advocate, and community moderator. When we communicate with another in careless ways — even if our intentions are good — it can hurt and reduce others.
Approaching connectivity with compassion, self-awareness, and an understanding that we're all different can make all the difference. The world is already against us in so many ways. Let's make it easier for each other. It's all a learning process. No one is perfect. And every day is a chance for us to try again.
Don't use phrases like, "I have it much worse than you," or "At least you're not [insert personal experience.]"
Every single AS patient is going to have a different experience. Many live with co-occurring conditions. Others are managing a household of children. Others live in poverty. There are whole variables that make any AS experience different from the next, so comparison — a pointless and tactless action — is not only rude, it's moot. Don't reduce another person's experience, if for no other reason than you don't have all the information. Obviously, we do this because we're hurting and exhausted, but that's a personal problem — and why we turn to our communities.
Don't shame people for wanting to quit their jobs or apply for disability, and don't make them feel like they're getting "the easy life" for free.
I've seen this time and again. Well-meaning chronic illness patients will say, "I think my job actually helps me cope with my AS," or "Why don't you just work? You seem like you still can." None of this is very necessary — or helpful! See point one. We all have personal, specific motivators.
As a full-time work-from-home freelancer myself, I've gotten snide comments about my choice — as if it's one of luxury and ultimate privilege. As if I can just lay around and do nothing all day. Freelancing from home can be just as stressful and taxing, and often freelancers make much less money. In short, if you're not willing to engage in a civil and nuanced conversation about the complexities of disability, the broken workforce, and a person's unique circumstances, then it's best to stay quiet. This sort of shaming happens all the time in abled societies; it shouldn't happen in the disability or illness communities.
Don't offer suggestions and advice rooted in financial privilege. No, not everyone can "just eat organic" or upgrade to first-class to get a better flight experience.
In a recent AS thread about travel tips, a patient wrote, "I always fly first-class so I can avoid pain." Not only was this statement said in a flippant manner, but it also lacks awareness of how other people live. For many people, first-class tickets are a non-option. We can commiserate on the painful experience of flying, but if we're offering advice to others I think we can all be a little mindful about the perspective from which we're coming.
Don't tell other patients that things "will get worse."
In my early post-diagnosis days, I spoke to so many incredible people in online AS support groups. They were kind, helpful, insightful, and supportive. A few are still my friends today. There were a handful of people, however, who almost relished the joy in telling me I'd be as miserable as they were. One woman said, "I'm glad you can walk today, but trust me you won't in the future."
I understood that these ways of communicating are rooted in pain and trauma and that they probably felt, in a way, that they were warning their younger self. I can appreciate this deep-seated impulse, but I don't think it's helpful. We can express our experiences without causing others undue stress.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?