人们没有意识到您的腰椎和SI关节有多重要，直到出现问题，您就像，哦！在2018年夏天，我注意到我的身体发生了一些非常奇怪的事情。我对我的医生说，我对自身免疫性疾病的了解不多，但我觉得自己的身体在攻击自己。我的医生根据她所看到的，确认我有。
我肯定有愤怒的时刻。我肯定花了几个月和几个月的时间来悲伤我的身体，我意识到您意识到，您患有一种进步的疾病，您将无法再成为一名远距离的跑步者。这是一个具有挑战性的诊断，但这不是生命终止的诊断。而且仍然有很多快乐和成就，您可以在这种情况下拥有。
从能力主义的角度来看，我有很多挂断。最初，整个世界对我来说是压倒性的。我不敢相信，我不得不做所有这些事情，只是为了从A点到达。这将如何影响我的生活？我的身份？在没有我的医生的情况下，我确实发现了这种药物。诊断几个月后，我在社交媒体上变得更加开放。我开始感到更舒服地把自己放在那里，我的意思是，我认为有很多力量，只是感觉自己并不孤单。然后快进到2021年3月。我的诊断全都出现了，当我第一次得到这些症状之间，当我制定了对我有用的治疗计划时，可能花费了一年半的时间，直到我正处于可以开处方生物药物的那一刻。这真的很痛苦和可怕。 And then I had some really bad side-effects from the first biologic drug that I went on. So I ended up switching to another one later after being totally off of them again. And it wasn’t until probably several months or so later that we figured out the right dosing and right kind of combination of medications to treat the AS that didn’t also involve really problematic side-effects. That feeling of, like, uncertainty knowing, like, I think this is going to get a bit better, but I’m not really sure when or like what better or steady-state even looks like. That was and has been definitely hard. I’ve always been a little bit of a hustler and someone who kind of just just wants to to go hard and make use of the time, you know, that you have. A lot of my goals, or the things that I strive for, really relate to, like, what’s the impact that you can have on other people?
就在我生病之前，我有点像我一样的地方，我对自己的身份很好。你知道，我对交叉性很好。就像，我没有更多的探索。然后就像，惊喜！就像，不。就像，我们只是要转动旋钮。这以某种方式发生在每个人身上。无论您成为父母还是出来，您的身份都会改变。我能够对自己的身份的不同部分以及我的身份的更新部分感到脆弱，这是不同的。我认为，脆弱性可能确实可以赋予脆弱的人以及当然还有其他受到影响的人的能力。 Just being someone who is able to let down their guard and share something personal, when I see other people do that, it definitely gives me permission to feel more open. And so wanting to be able to be that for other people, too. So, the modeling thing—March of 2021, I was lucky enough to get basically scouted by agency. While like it sort of came out of the blue, like I can, I can see how it like kind of also was like a progression of a few different things. There’s so much power in, there’s power in storytelling. If I have an opportunity to share my story or share a perspective in a way that is going to move the needle for someone or move the needle for a group, I’m willing to do it. I think I was like the first model with a visible disability that they, that they signed. You hear this all the time within the disability community - craving more representation, especially women. Craving to see, you know, more bodies like their own. And so I didn’t want to miss out on a chance to be a little small part of that. I’ve lived in New York for 13 years. And, it’s like, people just getting scouted off the street like, that’s something you hear about but it doesn’t actually happen to like real people until it happened to me and it was Instagram instead of the street. I feel grounded by thinking about, like, the sort of positive trends that my life has taken in the wake of this diagnosis, the community that I’ve met, like the relationships. I felt this identity shift has - has just directed my focus in a particular way and helped me forge connections with just a different group of people.
