9 Things You Shouldn’t Have to Say When You Have AS

尽管有可能妥协姿势和流动性，但对于许多与之生活在一起的人，他们的疾病是完全看不见的。“我年轻，看起来很健康，所以我感到内gui，坐在公共汽车上，”萨尔·马克思说。CreakyJoints.organd an artist in Brooklyn, NY. “I know people look at me and expect me to get up when an elderly or pregnant person boards, but they don’t understand how hard that is for me.” You don’t need to justify your self-care, but you can say: “I have a condition that makes standing really hard right now.”

不过，至少在公共交通工具上，有席位要有“有时候，我会在杂货店里，只是真的需要坐下，唯一的选择就是地板，”马克思说。“但是每个人都会像我疯了。”加利福尼亚州旧金山的心理治疗师LMFT解释说，慢性疾病尚未在我们的文化中正常化。“我希望有一天我们能够了解每个人都按照自己的方式照顾他们的身体。”

站在机场或退房柜台的长队可能会使AS的人感到震惊。但是，正如战士所说，如果您在坐下时要求某人排队，人们认为您懒惰。“当您患有慢性病时，您并不总是想在公开场合解释自己的病情，” Selfridge说，尤其是大多数人都没有听说过的人。（selfridge主持播客，“这不是我订购的,” about living with chronic illness.) Sometimes it’s helpful to carry a cane, she says, simply to act as a visual indicator to others to take you and your needs seriously.

密苏里州圣路易斯的倡导者杰德·芬利（Jed Finley）说，朋友和家人经常寻求帮助完成的帮助：搬家，园艺，保姆。他说：“我不想在恋爱关系中引起裂痕，所以我会提供帮助，但我知道最终会受到很多伤害。”当您拥有AS时，一周的疲劳和疼痛会使您低落。坦白地说，塞尔维里奇说。尝试说：“我真的想to help you and I希望我的身体会让我。有没有身体上没有身体的方法？”

“I wish people understood how suddenly my AS pain and fatigue can hit me,” says Kevin Thomas of Dallas-Fort Worth, TX. “My ex-coworkers were perplexed that one day I could walk and interact with little difficulty, and the next day I’d be bed-bound.” Those kinds of swings, typical of AS, can make others think you’re faking it to get out of work. Similarly, co-workers can be jealous of accommodations you might have, says Selfridge, like working from home. It’s helpful to remind them that you希望您可以与整个团队在一起，但是有时候您身体上做不到。

善意的人发誓要治愈他们的网球肘的补充剂或运动或草药茶将有助于解决。托马斯说：“当您患有慢性病时，没有'快速修复'。”“我们大多数人都学会在不断的疼痛和疲劳中蓬勃发展。”由于无法治愈，患者通常会花费数年的时间尝试不同的治疗方法来发现一种实际上可以缓解症状的治疗方法。因此，对于那些问：“你尝试过的人吗？”Selfridge建议回答：“谢谢，但是我在治疗方面感觉很好。这是真正帮助我的原因。”然后让他们知道他们如何最好地为您提供支持。

Friends and family sometimes lose patience when it comes to chronic illness. “The thing about chronic pain is no one gets it and no one wants to hear about it. You feel like a burden to everyone, so you paste on a smile and keep everything bottled inside,” commented someone with AS on a美国脊椎炎协会community board. That’s why it’s so important to connect with others who have AS. “Being able to vent with someone who gets what you’re going through is so important,” says Selfridge. Find an in-person support grouphere或在线社区here。

当患者拜访医生时，他们被要求以数值尺度评价当前的疼痛水平。马克思说：“这是对我的病情的一种减少措施。”“根据一天的不同，我的疼痛范围从'我感到紧绷'到'我有燃烧的感觉'到'我不能动。因此，马克思说，除非他们对疼痛的评价为10，否则医生认为他们的疾病受到控制，当时可能根本没有。

A trip to the zoo. Bowling. Drinks at a standing-room only bar. Many social plans can be excruciating for people with AS. And while no one with AS thinks all plans should be made with them in mind, the truth is, most people simply don’t understand what an AS-friendly activity looks like, so it’s up to you to let them know. If you’re visiting family, explain to them (in one-on-one conversations, which are always best, says Selfridge) that you probably can’t do the zoo, but you’d love to set time aside for board games at home.