人们没有意识到你的腰椎和骶髂关节有多重要，直到出了问题，你就像，哦!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，我对自身免疫疾病了解不多，但我感觉我的身体在自我攻击。根据她所看到的，我的医生确认我患有阿斯伯格综合症。
我确实有过愤怒的时候。我确实花了几周甚至几个月的时间哀悼我以前的身体，我意识到，你的疾病在恶化，你再也不能，像个长跑运动员了。这是一个具有挑战性的诊断，但它不会终结生命。在这种情况下，你仍然可以获得很多快乐和成就。
从残疾歧视的角度来看，我有很多困扰。起初，整个世界让我不知所措。我不敢相信，我必须做所有这些事情，就像从A点到b点，这将如何影响我的生活?我的身份吗?在我的医生不在的情况下，除了“来，服用这种药物”之外，我确实通过社交媒体发现了这一点。确诊几个月后，我在社交媒体上变得更开放了一些。我开始觉得把自己放在那里更舒服了，我的意思是，我认为那里有很大的力量，感觉你并不孤单。快进到2021年3月。我的诊断都是在covid之前，从我第一次出现这些症状到我接受对我有效的治疗计划，直到我可以开生物药物，可能花了一年半左右的时间。那真的很痛苦，很可怕。 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，我有点像在一个地方，我很擅长我的身份。你知道的，我很擅长交叉关系。就好像，我已经没什么可探索的了。然后就像，惊喜!不。比如，我们只要转动旋钮。在某种程度上，每个人都会遇到这种情况。你身份的某些部分将会改变，无论是你为人父母，还是你出柜。我已经能够对我身份的不同部分，以及更新的部分感到脆弱，这已经不同了。我认为，脆弱真的可以赋予脆弱的人力量，当然，还有其他受到它影响的人。 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.
