---
author: TVO Today
date: '2026-11-05'
guest: ''
layout: post.njk
source: https://www.youtube.com/watch?v=AAH1KSsIlm0
speaker: TVO Today
tags:
  - multiple-sclerosis
  - misdiagnosis
  - invisible-disability
  - healthcare-disparity
  - chronic-illness
title: 多发性硬化症的确诊与自爱：Rebecca Price 的确诊、误诊与生活重建
summary: 加拿大牙买加裔瑜伽导师 Rebecca Price 讲述了其多发性硬化症（MS）确诊经历。在经历左眼失明和加拿大医生的轻视与误诊质疑后，她赴美确诊。对谈探讨了黑人女性在 MS 研究中的代表性缺失、隐形残疾面临的污名、高昂医疗开支及牙买加农场疗愈。
insight: ''
draft: true
series: ''
category: health-wellness
area: life-family
project: []
people:
  - Rebecca Price
  - Nam Kiwanuka
  - Christina Applegate
  - Mitzi Joi Williams
companies_orgs:
  - MS Canada
  - Multiple Sclerosis Foundation
products_models: []
media_books:
  - Mistreated
  - Nature Reviews Neurology
status: evergreen
---
### 多发性硬化症的误诊现状与研究背景

**Nam Kiwanuka**: 你正在收听的是《Mistreated》。我是 Nam Kiwanuka。[音乐] 演员 Christina Applegate 曾分享她在 2021 年被诊断出患有多发性硬化症（MS），[音乐] 但在 2026 年 10 月，她透露在接受了数年治疗后，自己被误诊为多发性硬化症。多发性硬化症的误诊有多普遍？2024 年的一项研究旨在调查 MS 误诊与漏诊的发生率，结果发现误诊（即错误地给出 MS 诊断）的比例在 5% 到 41% 之间。相反，漏诊（即未被识别出的 MS 诊断）在 3% 到 58% 之间；在一项涵盖五项研究的荟萃分析中，女性被误诊为 MS 的可能性是男性的 2.1 倍。为什么获得 MS 诊断如此困难？根据多发性硬化症基金会的说法，部分原因是目前没有单一的诊断测试可以确定明确的 MS 诊断，同时也因为有许多疾病表现出与 MS 相似的症状。这些被称为 MS 模拟病（MS mimics）。该基金会还指出，某些自身免疫性疾病、血管性疾病和传染性疾病都可能表现出类似 MS 的症状。对于任何患有 MS 的人来说，及早获得诊断非常重要，因为残疾会随着时间的推移而累积。MS 的诊断必须准确且尽可能早地进行。根据加拿大 MS 协会的数据，75% 的 MS 患者是女性。而加拿大依然是世界上 MS 发病率最高的国家之一。2025 年发表在《自然评论·神经病学》（Nature Reviews Neurology）上的一项研究表明，多年来 MS 一直被视为一种主要影响白人女性的疾病。该研究的合著者之一、研究员 Teresa Gilner 表示：“我们发现这种疾病实际上在黑人女性中更为普遍，并且我们有证据表明环境和医疗系统中的不平等正在推动这一趋势。”今天我们采访了 Rebecca Price，一位有着牙买加背景的加拿大年轻女性。她将多发性硬化症的确诊称为“终极的自爱行为”。在左眼失明数月并在努力确诊 MS 的过程中，一位医生告诉 Rebecca，她看起来“太强壮了”，不可能得这种病。Rebecca 分享了她为何前往美国以获得明确诊断，[音乐] 以及为什么她随后决定在牙买加开办农场。Rebecca Price 现在加入了我们。
<details><summary>Original English</summary>
You're listening to mistreated. I'm Nam Kiwanuka. [music] Actor Christina Appleade shared that she had been diagnosed with multiple sclerosis in 2021, [music] but in October 2026, she revealed that after years of receiving treatment for it, she had been misdiagnosed with MS. How common is an MS misdiagnosis? A study from 2024 set out to look at the prevalence of MS misdiagnosis and underdiagnosis and it found that frequency of misdiagnosis that is an incorrect assignment of an MS diagnosis range from 5% to 41%. Conversely, underdiagnosis, that is an unrecognized diagnosis of MS, ranged from 3% to 58% and that in a metaanalysis of five studies, women were 2.1 times more likely to be misdiagnosed with MS compared to men. Why is it so hard to get an MS diagnosis? According to the multiple sclerosis foundation, this is partially because there is no single diagnostic test to establish a definite MS diagnosis and also because there are many diseases which manifest symptoms similar to MS. These are called MS mimics. The foundation also writes that some autoimmune diseases, vascular and infectious diseases can present like MS. And for anyone who has MS, getting a diagnosis early is important because disability accumulates over time. The diagnosis of MS needs to be accurate and occur as early as possible. 75% of people living with MS are women according to MS Canada. And Canada continues to have one of the highest rates of MS in the world. A study published in 2025 in Nature Reviews neurology shows that for many years MS was seen as a disease that affects mostly white women. This according to researcher Teresa Gilner, one of the co-authors from the study. She adds, "We've found that the disease is actually more common in black women and we have evidence that disparities in the environment and the health system are driving that trend." Today we speak to Rebecca Price, a young Canadian woman with roots from Jamaica. she calls a diagnosis of multiple sclerosis quote an ultimate act of self-love. After losing sight in her left eye for several months and in the process of trying to get a diagnosis for MS, a doctor told Rebecca that she looked quote too strong to have it. Rebecca shares why she traveled to the United States to get a definitive diagnosis [music] and why she decided to start a farm in Jamaica after. Rebecca Price joins me now.
</details>

>> 能请你先介绍一下你自己吗？
<details><summary>Original English</summary>
>> Could you please introduce yourself?
</details>

>> 嗯，我叫 Rebecca Price，我是一名瑜伽老师，呃，身心运动引导师（movement facilitator），我患有多发性硬化症。
<details><summary>Original English</summary>
>> Um, my name is Rebecca Price and I am a yoga teacher, um, movement facilitator and I have multiple scerosis.
</details>

### 左眼失明与确诊经历：“终极的自爱行为”

>> 很高兴你能来这里，Rebecca。那么，你是什么时候被诊断出多发性硬化症的？
<details><summary>Original English</summary>
>> It's so nice to have you here, Rebecca. So, when were you diagnosed with multiple sclerosis?
</details>

>> 我是在 2 月 14 日被正式确诊的。他们称之为终极的自……爱（self-glove），因为在 2023 年我确诊之前，我的左眼实际上已经失明了。嗯，那就是我发现自己患有多发性硬化症的过程。不过，现在回想起来，我注意到我以前可能就有一些被我忽略的症状或复发。但失去视力——因为它彻底让我左眼看不见了。嗯，显然那是你不得不去注意的事情，而不是像“哦，我在出汗，可能是在经历更年期”，或者我当时有的所有其他各种症状。在左眼失明之前，我并没有真正注意过它们。
<details><summary>Original English</summary>
>> I was officially diagnosed on February 14th. They call it the ultimate act of self- glove because um 2023 prior to my uh diagnosis I had actually lost the vision in my left eye. Um and that's how I found out that I had multiple scerosis. However, like now looking back I noticed that there's probably like symptoms or relapses that I was having that I kind of like just dismissed. But losing your vision because it totally made me lose the vision in my left eye. Um, clearly that was like something that you had to pay attention to versus like, oh, I'm sweating. Like, maybe it's menopause or d like all these other symptoms that I was having. I wasn't necessarily paying attention to them until I lost the vision in my left eye.
</details>

>> 经历那些对你来说一定非常可怕。但是，嗯，当我问你是什么时候发现的时候，你说是 2 月 14 日，一种终极的自爱行为。
<details><summary>Original English</summary>
>> That must have been really scary for you to go through. But, um, when I asked you when you found out, you said February 14th, an ultimate act of love.
</details>

>> 你能跟我谈谈这一点吗？
<details><summary>Original English</summary>
>> Can you talk to me about that?
</details>

>> 我就是因为那是情人节，对吧？所以对我来说，在那之前我的［清嗓子］家庭医生……因为我打电话给她，我当时吓坏了。我说，几个月前我去看她时我还完全好好的。因为我母亲死于癌症，我每年都会去做乳腺钼靶检查。所以我说，我之前去看你，一切都很正常，怎么突然有人告诉我我得了 MS，对吧？然后她打电话给我说：“我在你的核磁共振上看到了病灶，但我不能……我无法正式给你下诊断。”所以第二天，我去看了转诊给我的眼神经科医生。他告诉我我得了多发性硬化症，然后我……
<details><summary>Original English</summary>
>> I just because it's Valentine's Day, right? And so for me it was just that prior to that my [clears throat] family doctor I cuz I called her I was freaking out. I was like hey like I was perfectly fine a few months ago when I went to go see her. I go for yearly mamograms cuz my mother passed away from cancer. So I I was like I went to you I saw you everything was fine and how do I just like someone's telling me I have MS right? And so she called me and she said I see lesions on your MRI but I'm not like I can't officially diagnose you. So the next day when I went to go see the optic neurologist was who I sent was referred to. He told me that I had multiple scerosis and I
</details>

>> 我不知道，我称之为终极的自爱行为，是因为我不得不真正重新学会如何去爱自己、如何与自己相处，同时还要经历哀伤，因为在患上这种疾病的过程中，你会失去很多东西，对吧？就像我真的是有一晚去睡觉，第二天早上醒来就看不见了。对吧？我也曾睡下一觉醒来就无法移动我的双腿。对吧。嗯，从那以后我的身体出现了那么多功能障碍，而且这种疾病是非常进行性的。对吧？在你的潜意识里，你总会清楚可能会丧失行动能力，可能会失去视力。就像所有这些事情，还有你曾经拥有的那种生活——我以前教瑜伽、到处旅行、为耐克工作，做着所有这些非常酷的事情。然后你看到自己的世界在不断缩小、缩小、缩小，诸如此类。所以对我来说，我称之为终极的自爱行为，是因为我不得不重新设想那是什么样子。我不得不重新设想对自己给予宽容（giving self grace）是什么样子，并且［哼了一声］我不得不重新设想我该如何在这个世界上展现自己，以我现在这个样子、以我原本的人生态度以及我正在成为的人。
<details><summary>Original English</summary>
>> I don't know I call it the ultimate act of self- loveve because I've had to really relearn how to like love myself and live with myself and grieve at the same time because there's so much that you lose along the way of having this disease, right? Like I literally went to bed one night and woke up the next morning and I couldn't see. Right? I've gone to bed and woken up and not be able to move my legs. Right. Um like there's so many deficiencies that have happened in my body since um and the disease is very progressive. Right? And then in the back of your head you always have this understanding of like losing your mobility potentially losing your vision. Like all these things and this life that like you had right I was teaching yoga. I'm traveling. I work for Nike. Like all these really cool things. And then you see your world kind of like shrinking and shrinking and shrinking and and all those kinds of things. So for me it was like I call it the ultimate act of self- loveve because I've had to reimagine what that looks like. I've had to reimagine what giving self grace looks like and [snorts] I've had to reimagine like how I'm showing up in this in this world as I as I am as the person that I am and the person that I was and the person that I'm becoming.
</details>

### 黑人群体与健康领域的代表性缺失

>> 当你发现自己患有 MS 时，你知道那是什么病吗？
<details><summary>Original English</summary>
>> When you found out that you had MS, did you know what it was?
</details>

>> 知道，我觉得这很奇怪，因为我身处大健康（wellness）领域，对吧？我做过的很多工作都是围绕健康领域的代表性和包容性展开的，对吧？所以对我来说，我从未见过另一个……我所知道的唯一一个患有 MS 的黑人就是 Montel Williams，对吧？所以我从未……因此当医生告诉我时，我真的很震惊，因为我没有看到代表自己群体的形象，对吧？所以就有一个认知过程，对吧？然后就是整个这一套想法：“我把所有事情都做对了。我饮食合理，我练瑜伽，我冥想，我做了所有按理说能帮助你保持健康的事，对吧？而且我还在大健康领域工作。”
<details><summary>Original English</summary>
>> Yeah, I think it's so weird cuz I occupy this space in wellness, right? And a lot of the work I've done has been around like representation and inclusivity and wellness, right? And so for me, like I've never met another the only other black person I ever knew who had MS was Montel Williams, right? So I've never ever So when the doctors told me, I was like really shocked because I didn't see myself represented, right? And so there was like a learning curve, right? And then there's this whole entire thing of like I did all the right things. Like I eat right, I do yoga, I meditate, I all the things that would supposedly help you not be ill, right? And I work in wellness.
</details>

>> 你有自责过吗？
<details><summary>Original English</summary>
>> Did you blame yourself?
</details>

>> 不，倒不一定是自责。我只是觉得……该怎么说呢？我业内的一些同行有点像是在说：“这怎么会发生在你身上？”我觉得对我来说，那过去是、现在也仍然是一个学习、观察和体验的过程，然后我也明白其中存在一定程度的自责，对吧？比如“我到底做错了什么？”所以我想我首先陷入的是问自己：我做错了什么？我本可以把什么做得更好？嗯，我做了所有这些事，我吃着某种特定食谱，做了所有这些努力，最终我还是生病了。当你发现时，你曾对医生说：“黑人也会得 MS。”
<details><summary>Original English</summary>
>> No, not necessarily blame myself. I felt like I feel like, how do I say this? Some of my counterparts in the industry kind of were like, "How did it happen to you?" I think for me it was like and it is still this place of like learning and and seeing and being and then also understanding that like there's a level of like blame, right? Like what did I do wrong? So I think the first thing I went into was like asking myself like what did I do wrong? What could have done better? Um I'm doing all these things like I eat like a certain diet like all these things and I and I ended up getting sick. When you did find out, you said to the doctor, "Black people get MS."
</details>

>> 这也是你坦诚公开自己 MS 经历的部分原因吗？
<details><summary>Original English</summary>
>> Is that part of the reason why you're open about your journey with MS?
</details>

>> 目前被确诊为多发性硬化症人数最多的是黑人女性，对吧？而在涉及到纳入黑人的研究时，讨论存在非常大的鸿沟，对吧？多发性硬化症的影响以及疾病进展，落到黑人身上时要明显得多，嗯，破坏性更大，具有更持久的深远后果，对吧？所以，如果你在研究中看不到自己的代表，如果你在相关信息或代言人以及所有这些事情中看不到自己的代表，那我们该如何去努力寻找治愈方法呢？如果在那个领域你看不到自己群体的代表，我们又该如何谈论代表性和包容性？我隐瞒了很久没有告诉别人，因为我是靠肢体运动谋生的。
<details><summary>Original English</summary>
>> The highest number of people being diagnosed with multiple sclerosis right now are black women, right? And there's a very big gap around the conversations when we're talking about studies that include black people, right? The impacts of um multiple scerosis and disease progression when it comes to black people, it's far more um significant. um it's more detrimental. It has more long-lasting um ramifications, right? And so if you're not seeing yourself being represented in studies, if you're not seeing yourself being represented in like information or spokespeople and all those kinds of things, then how are we supposed to be able to like work towards a cure? How are we supposed to talk about representation, inclusivity in that space if you're not seeing yourself being represented? And I sat on not telling people because I move my body for a living
</details>

>> 而慢慢认识到自己无法再靠肢体运动谋生是非常艰难的，对吧？所以，在真正正式公布之前，我隐瞒了很长时间，因为我也意识到我那样做并没有展现真实的自己。而在我开始坦诚自己患有多发性硬化症的那一刻，我的私信就铺天盖地而来，人们纷纷发信息说“我也有多发性硬化症”、“我有红斑狼疮”、“我有这个病”，对吧？他们全都是有色人种，对吧，主要是黑人。对我来说，这依然是一个能与社区中的每个人一起展开这些讨论的落脚点，因为这类讨论发生得太少了。你住在加拿大，但当你发现并试图……
<details><summary>Original English</summary>
>> and to slowly understand that I can't move my body for a living is very hard, right? And um so I sat on that for a very long time before I actually officially announced it because I also recognized that like I wasn't being authentic to who I am. And the moment that I started being open about the fact that I had multiple scerosis, I was getting DMs left, right, and center from people who are like, I have multiple scerosis, I have lupus, I have this, right? And they were all racialized people, right? Predominantly black. And it still is a a place for me to land with everybody in community around having these discussions because they're not happening that often. you live in Canada, but when you found out that when you were trying to
</details>

### 医疗系统困境与跨国求医

>> 建立医疗护理团队，
<details><summary>Original English</summary>
>> establish a care team,
</details>

>> 嗯，你订了一张机票飞往佐治亚州亚特兰大去看神经科医生。
<details><summary>Original English</summary>
>> um you booked a ticket to fly to Atlanta, Georgia to see a neurologist.
</details>

>> 这是为什么？我订了机票去看 Mitzi Williams 医生，她正式确认了。我在这里的医疗系统中的求医经历并不是最轻松的。嗯，当我最初确诊时，我被告知我患有视神经炎，对吧，而多发性硬化症会影响你的大脑，它会侵蚀、在你的大脑以及大脑、颈椎和胸椎、脊髓上的髓鞘上造成病灶，然后是视神经，这些是主要部位，然后还有消化系统等其他地方。当我最初确诊时，嗯，你知道，我瞎了，我失明了很长一段时间，好几个月。而且，那是在疫情期间。我时刻记着这一点，因为在加拿大这边，我们当时很难获得医疗护理。嗯，但我确诊后被转诊给了一位神经科医生。我当时的眼神经科医生把我转诊给了一位神经科医生，当我去见他时，他告诉我，我看起来不像患有多发性硬化症的人。对吧。他告诉我我看起来太强壮了。我当时全副武装地前去，带着诸如“我是不是应该采取抗炎饮食，比如华尔斯方案（Wahls Protocol）”等所有这些想法，因为我去做过了研究，我做足了功课。
<details><summary>Original English</summary>
>> How come? I booked a flight to go see Dr. Mity Williams and she officially like confirmed there was so my navigation through the medical system here has not been the most easiest. Um when I first got diagnosed I was told I had optic nuritis right which multiple scerosis impacts your brain right it eats away at your creates lesions on your brain and your milein sheath on your brain your cervical and your thoracic spine your spinal cord and then your optic nerve those are the main places and then like your digestive like everywhere else and when I first got diagnosed um you know I went blind I lost my vision for a very long time several months And um and it was also during COVID. So I I bear that in mind because you know up here it was very hard for us to kind of like get care. Um but when I got diagnosed I was referred to a neurologist. My opto neurologist at the time referred me to a neurologist and when I went to go see him he told me that I looked like I didn't have multiple scerosis. Right. He told me that I look too strong. I went in armed with like should I do an anti-inflammation diet like um walls protocol like all these things because I went and did your research I did my research
</details>

>> 然后他却告诉我，我看起来不像一个患有多发性硬化症的人，然后……
<details><summary>Original English</summary>
>> and so he told me that I didn't look like someone who had multiple scerosis and um
</details>

>> 面对医生这样的说法，你是什么反应？
<details><summary>Original English</summary>
>> how do you receive that from a doctor?
</details>

>> 嗯，我觉得我离开时满心困惑，因为有人刚告诉我我得了这个病。我服用了一个月的泼尼松（prednisone），而服用泼尼松并不好受，那是一种对身体非常猛烈的类固醇药物。然后由于服用了它，所有这些其他症状开始显现，对吧？所以我正经历着身体上的所有这些并发症。我简直觉得自己的身体在崩溃。然后我去找一个医生，他却说：“不，你没得这个病，没什么大不了的。”而且我还觉得我的胸椎区域也有病变，因为再说一次，我是靠身体运动谋生的。而他却说没有。我说：“可是已经有两位医生说我患有这病了，我还有核磁共振证明我的视神经受到了损伤。而你却坐在那里说，‘噢，那可能只是一点小问题，别担心。’”然后，嗯，一个月后我的双腿失去了知觉。于是我再打电话给他，我说：“嘿，现在怎么说？”然后他们说：“噢，你得排队等着才能来看病。”诸如此类。于是我上网去查，找到了 Mitzi Williams 医生。嗯，她专门研究患有多发性硬化症的黑人女性。我致电她的诊所，说：“我知道我来自加拿大，嗯，你们可能没办法……但我真的很需要帮助。”于是，我订了机票，飞去亚特兰大，支付了看她所需的所有那些自费医疗费用［笑声］。她调出我的核磁共振结果，她说：“你看，这里有一个病灶，这里有一个病灶，这里也是。”她还用了嘻哈圈的缩写词，因为她说：“这是 Method Man，这个是某某某。”她向我准确指出了我的身体到底发生了什么。随后她确认我的颈椎和胸椎上有损伤或病灶。接着我飞回加拿大。我又挂号看诊并说道：“噢，情况是这样的。”我要求做另一次核磁共振。而当我做了下一次核磁共振后，他也说：“好吧，确实，你确实有这个病，这里全是病灶。”我就说：“好吧，那现在怎么办？”他还告诉我说我需要减肥。
<details><summary>Original English</summary>
>> Well, I think I left confused because I had somebody tell me like I had this thing like I was put on praone for a month and pazone is not fun to be on. It's like a very harsh steroid on your body. And then all these other symptoms started to manifest because I was on it, right? And so I'm experiencing all these complications with my body. I'm literally like feels like I'm falling apart. And then I go to somebody and he's like, "No, you don't have it thing, whatever." And I also felt like I had it in my thoracic area because again, I move my body for a living. And so he said no. And I was like, "Well, I have two doctors saying that I have it. I have a MRI confirming that there was damage to my optic nerve. And then you're sitting there and saying, "Oh, it could have just been just like a little thing. Don't worry about it." And then um a month later I lost the use of my legs. And so then I called him back and I was like, "Hey, what's up?" And then he was they were like, "Oh, you have to wait to come see." And all that stuff. So I went online and I looked and I found Dr. Mity Williams. Um she specializes in black women with multiple scerosis. I called her office. I'm like, I know I'm from Canada. Um, you probably won't be able to. I just need help. And, um, I booked a ticket, went down to Atlanta, paid all those medical fees that [laughter] you have to pay to see her. And she she took out my MRI results, and she's like, "Here's here's a lesion here. Here's a lesion here. Here's she used like hip-hop acronyms cuz she's like, "This is method man, and this is like whatever." And she showed me exactly what was going on with my body. And then she confirmed that I had um damage or lesions on my cervical and my thoracic spine. And then I flew back to Canada. I made another appointment and I said, "Oh, these are the things." And I asked for another MRI. And then when I did the next MRI, then he also was like, "Okay, yeah, you do have it." And here's all the lesions. And I was like, "Okay, now what?" And he also told me that I needed to lose weight.
</details>

>> 当然，减掉 5 磅，然后一切就都会好起来。我不想把话塞进你嘴里。你发现自己得了这种病，
<details><summary>Original English</summary>
>> Of course, this was 5 lbs and then everything would be fine. Um I don't want to put words in your mouth. You found out that you have this thing.
</details>

>> 你试图寻找答案，试图找到治疗方法。
<details><summary>Original English</summary>
>> You're trying to find the answers. You're trying to find a way for treatment.
</details>

>> 你去找了一个本该帮助你的人。他们却告诉你：“噢，你很好。”
<details><summary>Original English</summary>
>> You go to somebody who's supposed to help you. They tell you, "Oh, you're good."
</details>

>> 然后你做了所有这些额外的工作。你坐飞机，
<details><summary>Original English</summary>
>> And then you do all this extra work. You fly.
</details>

>> 你的病情恶化了。你腿部失去知觉。你离开这个国家。你自掏腰包。
<details><summary>Original English</summary>
>> You get worse. Feeling in your leg. You leave the country. You pay the money.
</details>

>> 有人肯定、甚至明确告诉你，你知道，
<details><summary>Original English</summary>
>> Somebody affirms actually says this is, you know,
</details>

>> 你被心理操纵（gaslit）了。但如果你当初没有去，如果你没有坚持并离开这个国家去求医，
<details><summary>Original English</summary>
>> you were being gaslit. But if you hadn't gone, if you hadn't pushed and seen left the country,
</details>

>> 会发生什么？
<details><summary>Original English</summary>
>> what would have happened?
</details>

### “雪花般的疾病”与被忽视的慢性病痛

>> 我觉得我可能还会经历更多次复发，因为对我来说，复发变得非常猛烈，对吧？我经历了一次接一次的连续复发，对吧？这也还是因为我此前被漏诊了那么久。但这种情况的讽刺之处在于，当我飞去亚特兰大看她时，我确诊的速度其实比许多其他黑人女性都要快。有的女性经历了 9 年、10 年、15 年才得到正式确诊。你经常会被心理操纵并遭到轻视。而且我认为因为这种病是一种“雪花病”（snowflake disease），就像我的症状可能与你的完全不同，对吧？因为病在大脑，每个人的大脑都有点不一样。嗯，有些时刻我至今依然在被质疑和轻视，对吧？我有朋友和我看的是同一位神经科医生，我们事后总会碰头商量或交流，看到医疗关怀如何被给予、又如何被克扣，这很有意思，对吧？甚至在像理疗或寻求额外援助这类事情上也是如此，他们会说：“噢，你是教瑜伽的，那我真的帮不上你，给你一些宣传单吧。”就像，“不，我现在坐都坐不住，我走不上楼梯。”过去四年里我的双手一直是麻木的，对吧？我感觉不到任何东西，诸如此类。而当你向他们陈述症状时，有时就会被直接无视。如果英语不是我的母语呢？对吧？假设我们有某种移民经历，对吧？假设我的社会经济地位稍微有点不同，对吧？我就不可能买得起去亚特兰大的机票，对吧？我就不可能像现在这样为自己发声抗辩。再说一次，研究中根本没有我们群体的代表，个案关怀中也没有代表。那么，如果研究中根本看不到你，不知道如何去为像你这样的人安排护理，
<details><summary>Original English</summary>
>> I feel like I probably would have had a few more relapses because with me the relapses became very aggressive, right? Um I had backtoback relapses, right? Um which is like you again I had gone undiagnosed for so long. But the the irony of the situation is like when I went to go see her in Atlanta, I got my diagnosis faster than a lot of other black women. There were women who had nine years, 10 years, 15 years before they got an official diagnosis. You are gas lit a lot. And I think because this disease is a snowflake disease, like my symptoms may be totally different than yours, right? Every because it's your brain. So everybody's brain's a little different. Um there are moments where I'm still being gaslit, right? I have friends who we have the same neurologist and and we always kind of like pow-wow after or have conversations afterwards and um it's just interesting to see how care is given and how care is not given, right? And having to navigate through like even things like physiootherapy and or getting additional assistance and they're like, "Oh, you teach yoga, so I really can't help you. Here's some papers." Like, "No, I can't sit. I can't walk up the stairs." like my hands I've been numb for the past four years, right? I can't feel anything and all those kinds of things. And when you bring your symptoms, sometimes it's just um dismissed. If English wasn't my first language, right? Say if like you know like we have this immigrant experience, right? Like say my social economic status was a little bit different, right? Um I wouldn't have been able to afford to buy a plane ticket to go to Atlanta, right? I wouldn't have been able to advocate for myself the way that I've been able to advocate. And again, there's no representation in studies. There's no representation in case cares. Like, so then how are you supposed to re receive care if you're not even being seen in a study to understand how to navigate care for someone like you
</details>

>> 或者不知道它在你身上如何表现？所以你的生活质量就会不断下降。呃，你刚确诊时知道 MS 是什么吗？
<details><summary>Original English</summary>
>> or how it presents in you? Um, so the quality of your life just keeps going down. Uh, did you know what MS was when you were first diagnosed, right?
</details>

>> 我当时纯粹把它理解为——这么说可能听起来很无知——一种影响白人的疾病，字面意义上的。它跟我毫无关系，对吧？然后当我去做研究时，当我看到这种疾病能造成什么破坏时，我真的、真的、真的很害怕。
<details><summary>Original English</summary>
>> I just understood it, like not to sound ignorant, as like a a disease that impacts white people, like literally. And it had nothing to do with me, right? like and then I when I did my research um and I saw what the disease is capable of doing then I got really really really scared.
</details>

>> 它是否有助于你理解自己身体的感受，还是带来了更多疑问？
<details><summary>Original English</summary>
>> Did it help you to understand how you felt in your body or did it create more question?
</details>

>> 它让我有了更清晰的理解，因为在确诊之前，我在洛杉矶为耐克拍摄，我本该做各种舞王式之类的动作，但我饱受慢性痉挛（chronic spasticity）的折磨，因此行动能力受限。我当时还在纳闷自己为什么做不出这些姿势，明明这很容易。所以现在回想起来，我明白了为什么我身体会出现某些状况而我当时无法理解，对吧？但是，你知道，那种理解也会带来一定程度的焦虑和恐惧，因为你能看到那不可避免的结局，而你正竭尽全力不让自己走到那一步。
<details><summary>Original English</summary>
>> created a better understanding because before I got diagnosed, I was in LA on a shoot for Nike and I was supposed to be doing like all these like dancers pose and all these things and I suffer from chronic specificity so my mobility is limited and I was wondering why I couldn't get into these poses like this is like this is easy and so now when I look back it makes sense for why certain things were happening with my body and I couldn't understand right um and then you know but that understanding also creates a level of anxiety and fear because you can you can see the inevitable and like you're just trying really hard not to get there.
</details>

>> 他们告诉你不可避免的结局是什么？
<details><summary>Original English</summary>
>> What have you been told is the inevitable?
</details>

>> 多位神经科医生告诉我，我将失去行走能力。
<details><summary>Original English</summary>
>> Um I've been told by multiple neurologists that I'm going to lose my ability to walk.
</details>

>> 我不想太情绪化。
<details><summary>Original English</summary>
>> I don't want to get emotional.
</details>

>> 没关系。
<details><summary>Original English</summary>
>> It's okay.
</details>

>> 嗯……身处那种处境是非常可怕的。对吧。我已经丧失了做某些事情的能力，比如去洗漱对我现在来说是一个非常复杂的过程。我的左眼留有疤痕组织，所以视力大不如前了。嗯，是的，你就是心里清楚，这种阴影一直笼罩着你。而且，我在网上有一个非常棒的圈子，里面有其他患有多发性硬化症的黑人女性，以及其他 MS 患者，你差不多可以看到自己的未来——各种助行器、代步车、轮椅，你明白我的意思吧，等等诸如此类。所以你心里多少有数。我们会分享类似“别让自己恶化到那一步”之类的信息，你懂我意思吗？但这就是我被告知的未来。
<details><summary>Original English</summary>
>> Um it's a very scary place to be in. Right. I've lost like my ability to do things like wash going to wash it is like a very complicated process for me now. Um again I have scar tissue in my left eye so my vision isn't as great as it used to be. Um and um yeah, it's just like you just know and it's like this thing that sits right and then like you know I have uh a really great circle of other black women who also have multiple scerosis and other people who have multiple scerosis online and you kind of can see your future like there are like mobility aids, scooters, wheelchairs, like you know what I mean and all that kind of stuff. So you kind of have an understanding. Um, we share like information about don't get there, like you know what I mean? Um, but that's what I've been told.
</details>

>> 这个世界非常不友善。
<details><summary>Original English</summary>
>> The world is very unkind.
</details>

>> 是的。
<details><summary>Original English</summary>
>> Yeah.
</details>

>> 对……
<details><summary>Original English</summary>
>> To
</details>

>> 非常不友善。
<details><summary>Original English</summary>
>> very,
</details>

>> 嗯，当你病情发作（flare）时，你的身体感觉如何？
<details><summary>Original English</summary>
>> um, what does your body feel like when you're having a flare?
</details>

>> 我觉得我差不多已经到了一个对身处疼痛之中变得非常习惯的地步。我想我已经不知道不痛苦是什么感觉了。对吧。我觉得，你知道，当他们告诉你得了这病时，他们会说：“噢，这是你的新常态。”我就会想：“什么是常态？”因为那种对常态的理解本身也植根于非常健全主义（ableist）的观念。所以，我一直处于持续的疼痛中。我吃着止痛药，但我根本搞不清楚它们起不起作用。我的双手和双脚没有任何知觉。我的步态异常，所以走路非常困难。我再也不能跑步了。看到这种机能退化、认知层面的退化也是如此，比如脑雾、极度疲劳等诸如此类的情况。所以，我一直生活在始终处于那种状态中，以至于有时当我有一次非常严重的病情发作……并且认识到现在的发作——MS 有复发缓解型（relapsing-remitting MS），意味着你复发一次，然后你可以服用类固醇或采取某种治疗，然后身体就会恢复，对吧？而当你发展成继发进展型 MS（secondary progressive MS）时，一旦发作，就不会再恢复了。那只会造成永久损伤，对吧？所以，你必须学会去适应这样一个事实：也许明天我就走不上楼梯了，或者也许明天……
<details><summary>Original English</summary>
>> I think I've kind of like gotten to a place where I've become really comfortable with like being in pain. I don't think that I understand what it's like not to be in pain anymore. Right. I feel like, you know, when they tell you you have it, they're like, "Oh, this is your new normal." I'm like, "What is normal?" Like, you know, because that understanding of normal is also rooted in like very abbleist understandings. And so, um, you know, I live in constant pain like all the time. Um, I'm on painkillers that I don't understand if they're working, if they're not. Um, I don't have any feeling in my hands and my feet. Um my gate is off so walking is very difficult. I can't run anymore. Um so to see the decline, the progression cognitively speaking too as well like um you know um brain fog, extreme fatigue, um things of that nature. So, I live in a constant state of always being in that state that sometimes when I have a really bad flare um and understanding that now flares like there there's relapsing remitting MS means you have a relapse and then you kind of like take steroids or do something about it and then you bounce back, right? When you have secondary progressive MS, when you have a flare, there is no bounce back. It's just damage, right? So, you have to learn to be comfortable with the fact that maybe tomorrow I won't be able to walk up the stairs or maybe tomorrow.
</details>

### 回归牙买加开办农场

>> 我觉得非常有意思的是，在你确诊 MS 之后，你决定去牙买加经营一个农场。
<details><summary>Original English</summary>
>> I thought it was so interesting that after you were diagnosed with MS um you decided to run a farm in Jamaica.
</details>

>> 是的。我是牙买加人。［笑声］在失去视力后，我决定回牙买加去，我注意到我的症状好像真的消退了很大一部分，对吧？所以我决定做的事情，就像在 MS 群体中大家都说的，就像你有中年危机一样，你也会有“MS 危机”，人们会做出这些重大决定，而我就是决定回家乡去务农。嗯。
<details><summary>Original English</summary>
>> Yeah. I um so I'm Jamaican. [laughter] Um, and I after losing my vision, I decided to go back to Jamaica and I noticed that my symptoms kind of really dissipated, right? And so what I decided to do was like everybody like in the MS community people call like like you know you have a midlife crisis like you have MS crisis and people do these these b like vast like decisions and I just decided to go back home and like farm. Mhm.
</details>

>> 对你来说那段经历怎么样？
<details><summary>Original English</summary>
>> And how was it for you?
</details>

>> 嗯，这是一段旅程。这是让我非常……它让我能够以一种不同的方式展现自己。置身于土地之上有一种特别的感觉，就像你也会摆弄园艺。我确实会。是的，我热爱园艺。所以，你看，你可以播下种子，看着它们生长。我认为拥有……
<details><summary>Original English</summary>
>> Um, it is a journey. Um, it's something that I'm really, um, it allows me to show up a different way. There's something about being on the land like you garden. I do. I do. Yeah. I love it. So, you see, you can plant seeds and you can watch them grow. And I think that um, having
</details>

>> 但你是在经营一个农场。
<details><summary>Original English</summary>
>> But you're running a farm.
</details>

>> 是的。不，但我意识到的是，它在应对带着这种疾病生活方面教会了我很多。教会了我耐心。它教会我接受“你播下种子却可能颗粒无收”的观念。比如种了一株玉米，遇到干旱，什么都没长出来。你懂我意思吗？那就再试一次，对吧？它教会你永不言弃的精神。它在学会静心、放慢脚步以及充实滋养自我方面教会了我很多，对吧？所以它完全是有机的，没有任何化学物质，这真是一种非常有趣的交融互动。因为在老家，人们有某些既定的做事方式，对吧？所以我像是一个外来的女孩，对吧？你知道我在加拿大待了这么久，我不像其他人那样说牙买加帕特瓦语（Patois）。所以我就是这个带着外来想法回来的外来女孩，比如“我们来堆肥吧，我们做这个吧，做那个吧”。这真是一个将两者交汇融合的极好途径，对吧？我称之为两全其美（the best of both worlds），对吧？我能把我在加拿大所做的带到那边，我也能在那里学习。我觉得它教会了我很多关于我自己的东西。而且它给了我希望，让我明白别人说什么并不意味着事情就一定会那样发生，对吧？我种了花，大家都说：“不行，长不出来的，那是精细的花。”结果花开花了，
<details><summary>Original English</summary>
>> Yeah. No, but what I realized is that it teaches me so much about navigating living with this disease. Teaches me about patience. It teaches me about like the idea of like you plant a seed and it doesn't work. Like a plant of corn, we have a drought, nothing came up. Like you know what I mean? Trying again, right? It teaches you the idea of like not giving up. It teaches me so much around the whole entire idea of just like learning to be still, right? And to slow down and like to pour into myself, right? So like it's all organic. There's no chemicals like and it's just this really interesting back and forth because back home there's certain things that people do, right? And so I'm really like and I'm this foreign girl, right? Like you know I've been in Canada for so long. I don't speak PWA like everybody else. So I'm this foreign girl who's come with her foreign ideas like let's compost, let's do this, let's do that. And it's like a really great um way to kind of intersect the two, right? and kind of like I call it the best of both worlds, right? I'm able to bring what I've done here down there and I'm able to learn as well. And I feel like it's taught me so much about myself. Um, and it's given me hope to understand that like just because someone says something doesn't mean that it's going to happen, right? I planted flowers and everybody was like, "No, it's not going to grow. Those are fine flowers." And the flowers grew,
</details>

>> 对吧？所以对我来说，这是……我称之为将我的考验转化为见证（turning my tests into testimonies）。这证明了可以说任何事情都是可能的，你只需要相信。
<details><summary>Original English</summary>
>> right? And so for me, that's a testament to like I call it turning my tests into testimonies. That's a testament to be able to say like anything is possible. You just have to believe.
</details>

### 隐形残疾与健全主义偏见

>> 我们刚才稍微触及了你提到的……有人说你看起来没病，你看起来很强壮。
<details><summary>Original English</summary>
>> We touched a little bit on what you were saying uh that that someone said that you didn't look sick, you looked strong.
</details>

>> 与一种看不见的疾病共存是怎样一种体验？
<details><summary>Original English</summary>
>> What's it like to live with a disease that's invisible?
</details>

>> 它无法治愈，并且随着时间的推移不断进展。我觉得我的外表看起来完全不像我正在经历的那样。有时我为此感到挣扎，因为有时我真的在苦苦支撑，对吧？而人们就是无法理解，或者他们只会说：“噢，她挺好的。”但我其实并不好。我真的一点都不好。所以我觉得这是一种双重性。我觉得我们对残疾的理解带有着非常浓厚的健全主义色彩。如果看到某人坐轮椅，好吧，他们是残疾人。如果看到某人缺了肢体或有视力障碍，噢，他们是残疾人。但我今天来到这里可能完全好好的，而明天或者甚至一小时后——我曾经满怀信心地去杂货店买东西，等我逛完杂货店时，我已经几乎走不了路了。需要明白的是，患有隐形疾病、拥有隐形残疾是一件非常动态的事情，我认为围绕这一点需要有更多的讨论，因为它影响到我的可信度（credibility），对吧？比如“噢，她是不是在夸大其词，或者这只是她在胡思乱想”，以及所有这类揣测。而且我认为很多患有像我这样的慢性疾病的人都是如此。再说一次，这就是“慢性”（chronic）这个概念，对吧？人们喜欢轻视它，对吧？而且，你知道，身处那种处境是非常艰难的，因为你必须去应付关于你应该展现出何种状态的先入之见。我总是告诉大家，我不是来这里给你们提供“残疾苦难煽情（disability or chronic illness porn）”的。你懂我意思吧？我在这里，我也在试图向人们表明，我们可以学习如何应对我们的疾病，同时也努力好好生活（thrive）。这并不是世界末日，我经常在网上讨论这些，比如“我们如何重新构想，或者我们如何转变调整”等等诸如此类的事情。但是，我们对残疾定义的健全主义理解，影响了我们在如何适应生活空间时的日常互动。我被允许坐在通勤列车（GO train）的无障碍车厢里吗？我能把车停在无障碍停车位上吗？就像，今天我真的起不来床，但事情仍然需要去办，我能获得像那些在外表上符合你们对残疾或疾病刻板理解的人一样的宽容和善意吗？
<details><summary>Original English</summary>
>> Uh it doesn't have a cure and one that progresses over time. I feel like I don't look like what I'm going through. And sometimes I struggle with that because sometimes I'm just like I'm really struggling right now, right? And people just don't get it or they're just like, "Oh, she's fine." And I'm not fine. I'm really not. And so I feel like it's this duality. I feel like we have very ableist understandings of what disability looks like. So if you see someone in a wheelchair, okay, they're disabled. If you see someone missing a limb or visually impaired, oh, they're disabled. But today I'm could come in here and be perfectly fine and tomorrow or even an hour from now I've gone shopping at the grocery store with good intentions. By the end of the time I'm at the grocery store I can barely walk. Understanding that having an invisible illness, having an invisible disability is something that's very dynamic and I think more conversation needs to happen around that because it impacts my ability to be consider like credibility, right? like, oh, is she exaggerating or is it in her head and all these kinds of things and I think that a lot of people who have chronic illnesses such as mine. Um, again, it's the idea of chronic, right? People like to dismiss it, right? And um, you know, I think that's a very hard space to be in because you're navigating like preconceived notions of how you're supposed to show up. And I always tell people like I'm not here for your like disability or chronic illness porn. Like, you know what I mean? I'm here and I'm also trying to show people that we can learn how to navigate our diseases and also try to thrive. Like it's not the end of the world and I talk about that a lot online like you know like how can we reimagine or how can we pivot and all those kinds of things but the idea of like our ableist understandings of what disability looks like impacts our everyday interactions of how we navigate spaces. Am I allowed to sit on the the disability cart on the go train? like can I park in the disability parking spot like you know what I mean like today I really can't get out of bed and but things still need to happen am I given that grace that someone else is who visually looks like what you understand disability or an an illness to look like
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>> 在节目的最后时刻，我想你之前已经稍微触及了这一点，不过 MS 教会了你什么？
<details><summary>Original English</summary>
>> in our final moments I think you've touched a little bit on this uh but what has MS taught you
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>> MS 教会了我很多，我认为最重要的是教会了我宽容对待自己，对吧？并尽我所能做到最好，对吧？我总是对人们说：我可能患有 MS，但 MS 并不能控制我。对吧？它教会了我很多关于在一个不理解你的世界中如何为自己保留空间，对吧？我认为我生活在既身为黑人女性、又是残疾人的交叉性（intersectionality）之中。这本身就已经承受了太多，对吧？所以，我认为它只是给了我宽容对待自己的机会，并准许我真正按照自己的方式去生活。我前几天和别人出去吃晚饭时真的也是这么说的。我说我现在的处境是无法承受任何压力的。压力会让我进医院，而这一个触发因素就可能让我陷入无法挽回的恶化螺旋中。所以现在我进入了一个探讨“好好生活是什么样子？运动我们的身体又是什么样子？”之类的阶段。所以我觉得 MS 教会了我尽可能真实地展现自己，并用我所拥有的一切尽力而为。就像 Mariah Carey 说的那样，尽我所能做到最好。我的天，当那个表情包出现时，“我正在尽我所能”。［笑声］
<details><summary>Original English</summary>
>> MS has taught me um a lots has taught me most importantly I think about giving myself grace right? And doing the best that I can, right? I always say to people, I may have MS, but MS doesn't have me. Right? And it's taught me a lot about how to hold space for myself in a world that doesn't understand you, right? I think I live in the intersectionality of being a black woman, disabled. Um, and that within itself has been a lot, right? Um, and so I think it's just given me the opportunity to give myself grace and it's given me permission to like really live life on my terms. I really tell that like I was saying that to someone the other day when I was out to dinner. I'm like I'm in a space where like I can't afford to be stressed. Like stress will make me end up in the hospital and that one trigger could put me down a spiral that I might not be able to recover from. And so now I'm in a space of like having conversations about what does it look like to thrive? What does it look like to move our bodies? Like and all those kinds of things. And so I feel like MS has taught me to just show up as authentically as I can and to do the best I can with what I got. Like Mariah Carey said the best I can with the best. Oh my god. When that meme comes up, I'm doing the best I can. [laughter]
</details>

### 高昂医疗开支与对政策制定者的呼吁

>> 确实，那就是我，对吧？你希望政策制定者了解患有像 MS 这样的自身免疫性疾病是什么感受？
<details><summary>Original English</summary>
>> Literally, that's me, right? Um, what do you want policy makers to know about what it's like to live with an autoimmune disease like MS?
</details>

>> 需要进行更多的研究，对吧？我想，我和我这里的神经科医生交流过，我在牙买加也有一位神经科医生。看到这两者在不同空间中的表现真的很有意思，不过需要更多关于身为有色人种罹患自身免疫性疾病意味着什么的讨论，因为这确实存在差异，对吧？同时还要理解什么是残疾，对吧？还有像申请残障津贴这类事情，那是一个非常艰难的过程，对吧？收入会有显著的损失。在理解这一点上有许多问题：仅仅因为某人有残疾，并不意味着他们就必须生活在贫困线以下。什么是生活——好好活着？生病的代价是极其昂贵的。我的一种药物在没有自付额减免或安大略省 Trillium 药物计划协助的情况下，单次治疗就需要 39,000 美元［清嗓子］。不好意思，是 39,000 美元……
<details><summary>Original English</summary>
>> There needs to be more research, right? I think, you know, I have conversations with my neurologist here. I also have a neurologist in Jamaica. Um, and it's really interesting to see the two show up in different spaces, but like um conversations about um what it looks like to be a racialized person um suffering from autoimmune diseases because it is different, right? um as well as um understanding what disability is, right? Um and also like things like applying for disability, right? That's a very like it's a very hard process, right? Um there's a significant loss of income. Like there's a lot of things that go around that understanding that like just because someone has a disability doesn't mean that they have to live below the poverty line. What is a living like living like living well, right? Like being sick is expensive. Like one of my medications without the help of Copay or Trillium is $39,000 for one [clears throat] treatment. Sorry. $39,000
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>> 是一年的费用吗？
<details><summary>Original English</summary>
>> for the year.
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>> 不，是单次治疗。而我要做两次治疗。
<details><summary>Original English</summary>
>> No, for one treatment. And I was doing two treatments.
</details>

>> 39,000 美元。
<details><summary>Original English</summary>
>> $39,000.
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>> 单次治疗 39,000 美元。
<details><summary>Original English</summary>
>> $9,900 for one treatment.
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>> 我做了两次。是的，那还仅仅是一种治疗药物。
<details><summary>Original English</summary>
>> And I did it twice. And yeah, that's just one treatment.
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>> 我现在服用的药物是一种注射剂。我现在使用的其中一种药物是注射剂，每次治疗大概要 3,000 到 5,000 美元。
<details><summary>Original English</summary>
>> The medication that I'm on right now is an injectable. Like one of the medications I'm on right now is an injectable and it's like $3 to $5,000. per treatment.
</details>

>> 哇。我完全不知道。
<details><summary>Original English</summary>
>> Wow. I had no idea.
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>> 所以我真的觉得政策制定者需要明白，没有人是一早醒来说：“嘿，我想得 MS，我想生病”，对吧？为了照顾好自己所产生的开销是极其惊人的，对吧？如果你们真正采取必要的防范措施并制定政策让人们能够照顾好自己，而不是让我最终在发病时不得不频繁跑急诊室或者经历所有这些麻烦，情况本可以得到更好的改善，对吧？我认为政策制定者需要更好地去理解这一点。我认为在事情真正发生在自己身上之前，根本没有人会在乎，对吧？而一旦发生在他们身上，甚至对我作为一名教师来说，我现在对动作调整（modifications）的理解也大为不同了，因为我必须对自己做出调整才能活动，对吧？我敦促政策制定者在真正理解患病的经济拮据与影响方面做得更好，尤其现在生了病、又是单身母亲，对吧？所有这些问题：我该如何支付房租？我该如何支付药费？如果我决定采取任何额外治疗，我又该如何支付？当一包无麸质面包要 10 美元时，我该怎么去坚持无麸质饮食？你懂我意思吧？诸如此类的所有事情，然后还要去维持一份值得过的人生，对吧？我认为很多患有自身免疫性疾病或慢性病况或残疾的人，都生活在远低于贫困线的水平。他们在挣扎——心理健康、身体健康，所有这些都在面临挑战。而这实际上让作为纳税人的我们付出了更高的代价，远不如我们齐心协力让政策更加完备、让人们能够获取所需的资源和支持以维持健康。
<details><summary>Original English</summary>
>> And so I I I really feel like policy makers need to understand that like no one I didn't wake up and say, "Hey, I want to have MS. I want to be sick, right?" Um and the cost that it is that you incur in order for you to take care of yourself is is is astronomical, right? Um, you know, and having an understanding of like if you it would be be more amendable if you actually took the necessary precautions and put the policies in place for people to be able to take care of themselves rather than me ending up having to constantly go to like the emergency room when I have a flare or all these kinds of things, right? And um I think policy makers need to do a better job at having an understanding. I think no one really cares about these things until it happens to them, right? And then when it happens to them, then you like even for me as a teacher like now I understand modifications a lot differently because I have to make modifications for myself to be able to move, right? I invite policy makers to do a better job at really understanding the financial constraints and impacts now being sick, being a [clears throat] single mom, right? Like all these things like how am I supposed to pay my rent? How am I supposed to pay for my medication? How am I supposed to pay for any other additional treatments that I decide to do? How am I supposed to eat gluten-free when bread is $10? Like, you know what I mean? And all those kinds of things and then um and then still have a life that's worth living, right? And I feel like a lot of people who have autoimmune diseases or conditions or disabilities live well below the poverty line. They're struggling um mental health, physical health, like all these things. And it's actually costing us as taxpayers more than if we actually just got it together and made it more amendable for people to be able to access the resources and supports they need in order for them to be well.
</details>

>> Rebecca，非常高兴你能来参加播客。
<details><summary>Original English</summary>
>> Rebecca, it's been great convenient having you on the podcast.
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**Nam Kiwanuka**: 这里是《Mistreated》。感谢收听。我们非常感谢 Rebecca Price 在我们的对话中如此坦诚，[音乐] 我们祝愿她在牙买加的农场一切顺利，并期待有朝一日能去拜访。您可以在任何下载播客的平台关注我们的节目，以便在每期新节目上线时收到通知。我们非常期待听到您的反馈。您可以给我发邮件至 mistreated@tvo.org。我们每封邮件都会认真阅读，或者您也可以在社交媒体上与我联系。我想读一条来自我们与 Cynthia Mulligan 那期节目的听众留言：“非常棒的采访，言简意赅。”非常感谢你，Diana。如果您还没来得及观看，可以在我们的 YouTube 频道或任何播客平台上找到该期节目。非常感谢你们所有的电子邮件和留言，我们非常感激。本期节目由 Shantel Dharma 和我共同制作，Colin Kish 剪辑。统筹制作人是 Matthew O'Mara，数字短视频制作是 Edwin Jansen，动态图形设计师是 Aush Madame Shedavar。[音乐] 摄像工作由 Max Stussi、Diego Garcia 和 Ricardo Diaz 负责。
<details><summary>Original English</summary>
This was Mistreated. Thanks for listening. our appreciation to Rebecca Price for being so open in our conversation [music] and we wish her much luck with her farm in Jamaica and hopefully a visit sometime. You can follow our show wherever you download your podcast so that you can get notified each time a new episode is available. We would love to hear your feedback. You can write me an email at mistreatedodcast.org. We read them all or you can reach out to me on social media. I'd like to read a comment from our episode with Cynthia Mulligan. Excellent interview. Short and sweet. Thanks so much, Diana. And if you haven't had a chance to watch, the episode is available on our YouTube channel or wherever you find your podcasts. Thank you so much for all of your emails and comments. We appreciate them. This week's episode was produced by Shantel Dharma and me and edited by Colin Kish. Coordinating producer Matthew Omara, digital shorts by Edwin Jansen, and motion graphic designer Aush Madame Shedavar. [music] Camera work by Max Stussy, Diego Garcia, and Ricardo Diaz.
</details>

>> [音乐]
<details><summary>Original English</summary>
>> [music]
</details>

>> 提词器由 Elisa Verley 负责。制作支持来自 Christy McLeod 和 TVO 数字媒体服务团队，特别感谢 TVO 演播室演职人员。Laurie Few 是数字部门执行制作人，Vanessa Case 是媒体副总裁。非常感谢您的收听。
<details><summary>Original English</summary>
>> Teleprometer by Elisa Verley. Production support from Christy Mloud and TVO's digital media services team are thanks to the TVO studio crew. Lori Fu is the executive producer of digital and Vanessa Case is vice president of media. Thanks so much for listening.
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