慢性荨麻疹耻辱的隐形伤疤:如何愈合

经过Marisa Zeppieri-Caruana 病人倡导者

Research tells us我们只有几秒钟对别人留下第一印象,我们中的大多数人都希望在那段时间前进。但是,如果你养成慢性,可见的皮肤状况怎么办,几乎不可能隐藏?

For people like me who live with chronic spontaneous urticaria (CSU), or慢性荨麻疹,在判断外观时对外界对外界发出良好印象的愿望可能是棘手的。

处理慢性荨麻疹可能是令人沮丧的,并且有时难以令人沮丧,因为爆发对他人如此可见,试图打击耻辱通常可以比病态本身更具挑战性。可以伴随着慢性疾病的耻辱可以留下我们周围那些不可见的伤疤,但在荨麻疹清算后,他们可以影响我们。

我的慢性荨麻疹诊断

My family first started noticing my predisposition for hives shortly after I was born. I was already exhibiting other autoimmune issues such as asthma and allergies, and with CSU falling under the umbrella of an autoimmune disease, it made perfect sense — yet no one made the connection and a diagnosis was far off.

Instead, it was mistakenly assumed that every outbreak of hives must be linked to an allergic reaction or specific allergen. Though a specific allergen can be the cause for hives in certain cases, the cause for chronic urticaria is unknown in up to 80 – 90 percent of cases.

虽然我的一些蜂巢爆发(即使是今天)都与过敏原直接相关 - 例如当一只小猫或小狗舔我时,我吃海鲜,或者我触摸某些类型的金属 - 我30岁的严重爆发,持续了几个月,实际上是什么helped my allergist diagnose me with CSU.

The outbreak began as red rash on my thigh that resembled heat rash and consisted of tiny pin-prick marks. Within 48 hours, the rash spread all over my body into large weals ranging from the size of a dime to the size of quarters. The flare-up was excruciating physically, as the hives caused burning and严重瘙痒, making it uncomfortable to work or even sleep. One of the worst aspects of this flare was that any movement caused more hives to erupt on my skin.

心理上,爆发造成的收费。首先,它觉得它永远不会消失。即使在每天服用多种药物的六周后,荨麻疹也没有放松。

Chronic hives
During her most severe outbreak, Marisa had hives all over her body for months./Marisa Zeppieri

The Stigma of Chronic Hives

在公共场合出去另一个故事都在一起。我拼命地掩盖了,但是当你有数百个荨麻疹从你的脚趾覆盖你的皮肤到你的额头时,这几乎是不可能的。从人们盯着人们的凝视,当他们第一次看到荨麻疹时,他们往往是整个整个经验的最糟糕的部分 - 除了穿着和移动的痛苦和瘙痒。

我可以理解人们的担忧是否hives are contagious. To those who aren’t familiar with CSU, it can seem like a rash, and let’s face it, some rashes are extremely contagious. But CSU is not. And the reality that many are unaware that these types of hives even exist,and他们不可转化,让像我这样的人带来讲话和分享我们与世界的故事的重要性。不是每个人都会遇到一篇文章或研究条件,所以我觉得这是我的使命,以某种方式解释CSU是什么以及它如何影响人们。

在我的严重爆发期间,我也意识到保持积极的重要性,而不是让患有慢性疾病的抑郁症来控制我的生命。事实上,压力是CSU最大的触发器之一,并且在痛苦中,不知道爆发会消退,并且物理地看到皮肤上的持续爆发是巨大的压力来源。因此,您可以看到一个自由循环开始的容易程度,从中应力导致更多的爆发,这导致更多的压力。

Mental Health Care With Chronic Hives

Seeing a counselor was one of the best forms ofself-careI added into my weekly regimen. Having a neutral, trusted party with whom I could share the ups and downs that come along with a chronic illness (I also have lupus in addition to CSU), was a crucial element in keeping my stress levels low.

今天,我也将其他形式的自我照顾进入我的生活,包括恢复性瑜伽,日记,花时间阅读,并访问当地的盐洞穴。如果我看到另一个CSU爆发的任何迹象,我也会立即安排预约的预约,这让我在许多情况下帮助我留下来。

我对处理慢性荨麻疹的其他人的建议是使用过敏症,看看你是否可以确定任何特定的触发器。在许多情况下,这很难确定,但你可能是罕见的例外!此外,达到正在处理条件的其他人,无论是通过内部组织,在线论坛或私人Facebook页面。

最后,不要让耻辱围绕着看到辅导员阻止你寻求外部帮助。有许多无形的伤疤可以留在慢性疾病爆发的后果中,但有支持和鼓励可以帮助在心理和情绪水平上带来一些愈合。

Watch Marisa’s chronic hives journeyto learn more about how she's tracked her triggers and adapted to living with her condition.

遇见我们的作家
Marisa Zeppieri-Caruana

Marisa Zeppieri-Caruana是一名作者,记者,前纽约夫人,Lupuschick.com的创始人,纽约的非营利组织和屡获殊荣的狼疮患者网站。她是狼疮的作者:现实生活,真正的患者,真实的谈话和旅行在美国周围的旅行。定期对自身免疫性疾病的主题口语。在空闲时间,她是一个有爱的食物摄影和造型的狂热贝克。目前正在完成她的回忆录,Marisa居住在纽约与她的丈夫,妈妈和救助狗,柏忌。