然后和现在：我不会被克罗恩病的定义

The challenges of inflammatory bowel disease (IBD) are no match for Maya, who was diagnosed with Crohn’s disease at age 9. Harnessing her inner strength and the support of friends and family, Maya shares how she took control of her life and began living it to the fullest in this letter of advice to her younger self:

亲爱的玛雅，

9岁的孩子很难 - 友谊可能会令人困惑，小兄弟可能会很烦人，老师已经说过“您必须为中学做好准备！”9岁患有炎症性肠病甚至更难。相信我，我明白。我去过那儿。

起初，您感到恶心，不知道为什么。然后开始变得更糟。感到疲倦和虚弱，持久胃痛，努力吃任何东西 - 这些不是“正常” 9岁的孩子经历的事情。我知道您想要的就是“正常” - 不必处理这些事情。我知道你晚上醒着，想着“为什么我？”我知道你很害怕。我也知道您坚强并且有能力拥有令人难以置信的事情。

The frequent doctor visits and tests are scary – drinking strange liquids and lying still while a big machine scans your body, or listening to the doctor say, “your SED (sedimentation) rate is high” with a concerned look on her face. It feels like life has become full of unknowns, but I know you have the strength and courage to face it. Remember when you had to get your first real blood test? You kicked and screamed the whole car ride, and then you walked through the doors of the doctor’s office with your head high and didn’t shed another tear while the phlebotomist drew your blood. You knew that you had to conquer the fear, and you did. Part of being alive is having to do things you really don’t want to do sometimes, and you had to learn this lesson earlier than most.

But now the many tests are behind you and your sickness has a name: Crohn’s disease. And now you can work on feeling better.

您对爸爸妈妈有强有力的拥护者，以及一个充满爱心的社区支持您 - 让他们在很难在自己内部找到它的日子里提供帮助，并为您提供力量。你妈妈知道这是什么样的；她也患有克罗恩病。还记得您何时必须学习如何第一次吞咽药丸吗？她与您一起坐了几个小时，通过挫败感和愤怒，尝试不同的方法来帮助它 - 冰淇淋，苹果酱，酸奶。最终，您做到了！一旦克服了异常的感觉，您就会弄清楚如何自己吞下药丸。

Finding the right treatment and trying different combinations of medicines can feel like a rollercoaster, and I understand it’s tiring. Sometimes you begin feeling better and hopeful, only to be let down by a flare up a week later. Hang in there for a little while longer, because it will get easier. Scientists have been working hard to understand inflammatory bowel disease and how to stop it in its tracks. With new developments in medicine, your options will improve and the days of trial and error will be over. You will find a treatment that works for you and allows you to do everything you hope to - from playing on the varsity field hockey team to traveling to New Zealand!

Talking about your illness with friends or classmates feels strange, and I know you prefer not to tell anyone. I know you don’t want to call attention to yourself, and it’s stressful to have to tell teachers when you need to leave class. It seems like nobody would understand, that they would think you’re weird and even contagious. It feels like you’re the only one, like it’s taboo to have a disease. Let me share a little secret: when it comes to health conditions, almost everyone’s got something they’re dealing with. Not everyone has an autoimmune disease, but as you get older, your peers will relate to you with their own health-related challenges and it will get easier to discuss openly. Public awareness and understanding of both IBD and autoimmune disease will increase as you get older, and this too, will help you connect with others who are going through similar difficult experiences.

现在，这是重要的部分，因此请密切关注：随着年龄的增长，您学习的两个最有价值的教训将是自我接受和自我保健。现在，您可能想将对疾病和决策的理解留给父母，并在感觉良好时忽略疾病。但是，克罗恩病的大部分时间都会与您在一起，要爱自己的整个自我，您必须接受它作为您的一部分。挑战，恐惧，挫败感将使您成为可以从波士顿到旧金山遍及全国的人，而无需认识任何人，那种可以选择改变职业道路并遵循他们的创造力的人。

Accepting that Crohn’s disease is part of who you are will help drive you to learn more about the disease, to learn how to be an advocate for yourself and to seek out the best ways of caring for your health on a day-to-day basis. And with the progress of science, there continues to be promising research that I’m hopeful could make a difference in your life and in the lives of others like you.

我对您的最终建议是听和尊重您的内在声音，因为您拥有的智慧和力量比您知道的要多得多。

充满爱心和信心，
Maya

Maya W.是居住在旧金山的作家和创意专业人士。她是一名健康沟通者，借鉴自己的个人经验，以帮助提高理解并弥合卫生保健部门各个方面的鸿沟。目前，玛雅人专注于扩大她对电影讲故事的热爱。当她不在桌子上时，可以发现她探索北加州的红木和海滩，并自愿参加当地电影节。

弗洛里安·迪克曼（Florian Dieckmann）
电子邮件：florian.dieckmann@abbvie.com
Call: + 1 847-937-2296

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