从星星运动员到强直性脊柱炎患者倡导者
Growing up, CharisHill knew that her father had an illness with a hard-to-remember name that curved his back and left him in chronic pain. But she’d been told this disease only affected men, so she lived her life without concern for her genetic inheritance.
A star soccer player in college, she found work as a professional mover, a bicycling advocate, a fashion model — jobs that took advantage of her physical strength and willowy good looks. Then she was diagnosed with ankylosing spondylitis (AS), just like her father. Today she blogs about her experiences, leads her local AS support group, and advocates for the chronic-illness community — including women with AS.
Current studies show that more men than women have AS, with some sources claiming the ratio is 3:1, yet that ratio has decreased and is expected to continue to decrease. Charis shares her story with HealthCentral.
HealthCentral (HC):你是何时以及如何诊断为何时患有？
Charis Hill:我了解到我的26日诞辰五天，于2013年。我一直在对几个月的呼吸突发作战，呼吸显着突出。抗生素没有帮助 - 事实上，我一直变得更糟，变得大多是卧床不起。我甚至在一个两周的时间内迫切需要两次肺炎恐慌和心脏病发作恐慌，但测试并没有表明任何异常。
On paper, I was the picture of health. In person, I was very sick. When doctors tried to say it was all in my head and give me anti-anxiety medication and antidepressants, I reached out to my estranged father to find out more about our family’s medical history. I knew he had AS, but I never once considered I would inherit it — growing up, I was told it was a man’s disease. His email response still haunts me: “Charis… it sounds like you could have AS… I need you to call me.”
虽然我在26岁诊断出来，但我的症状开始了我13岁甚至更年轻的时候。我曾经认为我的成长痛苦比我的同龄人更糟糕。我对此保持安静，因为我很尴尬，但回头看，我意识到这是一种早期的症状。
HC：你给了一个TEDX的谈话，你称之为“无形疾病”。怎么会这样？
Charis Hill:We live in a world that is so fast-paced, it almost seems that everything is temporary; that if someone is sick today, they should be better tomorrow. I think this attitude causes society to blame people who have a chronic illness. This creates a stigma, leading most people with AS to, well, hide it as much as possible so we can “pass” as functioning members of society.
People with ankylosing spondylitis are often in pain 24/7, but we’re also some of the strongest people you’ve ever met with our superhuman pain tolerance and ability to accomplish things with no energy. We didn’t choose to be strong — we have no choice but to be strong, just to survive.
HC：你父亲作为你的观点的塑造经验如何？
Charis Hill:Growing up, I saw my father only once a year in wintertime. I struggled to understand why he was hunchbacked but was more curious about how he adapted to his physical deformity.
我花了很多时间练习（私人）他如何平衡一只脚，并将另一只脚趾指向地面，以向后枢转他的躯干，所以他可以看看我而不是直接在地上。我知道他有疾病，但我永远无法记住它的名字。
My father also smoked a lot and was an emotionally scarred person who handled anger in really unhealthy ways, and I somehow connected that to his disease. When I was diagnosed all I could see in my future was becoming a severely physically deformed, manipulative, violent, and lonely person living in a RV. I am still doing a lot of self-work to believe that my future is completely different!
HC：你有多改善你的日常生活？
Charis Hill:我已经学到了 - 令人难以置信的慢慢，因为我顽固 - 拥抱任何让我的生活更轻松的东西，无论它对老年如何让我感受到。我曾经相信使用支架，压缩手套或甘蔗会大大妥协我的身份作为年轻，以前活跃的人，但我已经学会了他们帮助我参与生活的更多！我现在无耻地利用了任何辅助技术，无论是我床的特殊枕头还是机场的轮椅，所以我可以用我的能量做更多重要的事情。
我所做的另一件简单的事情是在单一部分冻结现成的食物，以便每当我无法花费任何能量烹饪时，我可以冻结和微波。
HC：Can you talk about the intersection of AS and mental illness?
Charis Hill:根据国家心理健康研究所，患有慢性疾病的人具有更高的抑郁症风险，抑郁症的人们具有更高的发展慢性疾病的风险。
强直性脊柱炎是一种非常紧张的疾病，因为人们倾向于隐藏它，他们更有可能感受到孤立 - 许多慢性病患者的常见主题 - 这导致心理健康状况不佳。我居住在诸如此之上的少量精神疾病depression，焦虑和后创伤后的应激障碍。
它们都互相互动，需要不同的治疗方法。挑战不仅仅是杂耍的药物，还要注意我在精神上有一个特别压力的时间时，我的身体症状如何加剧，反之亦然。
由于我的精神科医生在不同的办公室工作而不是我的专家，我经常必须成为他们的联络，这给我带来了很多压力。有时候我会晕眩，我的部分会有很大的工作来与我所有的医生沟通，以弄清楚眩晕是否是药物的症状或我的条件之一的效果。
许多人不明白我也挣扎，因为我一般可以与人们互动而不表现出我在心理胁迫下。我很难表达我的思想和我的身体一样破碎，我经常在回家休息脑海和身体时立即爬到床上。
