Is It Hard to Write Our Eczema Stories?
Last updated: June 2021
We've talked about why it's hard to open up about eczema, how some found the courage to start talking about their skin, and how the advocates at AtopicDermatitis.net came to be.
This time, the Editorial Team at AtopicDermatitis.net wanted to ask our advocates if it's hard to write about their experiences with eczema and this is what they said:
Finding the balance between negative and positive tone
Cora Lyn: The most challenging part is trying to decide how to say what I want to get across without being too negative or too "Pollyanna." Both can turn people off. Then there's the double-checking to make sure my take on something is still relevant. But mostly I've always been one to keep any negative feelings to myself, so putting them down on paper still feels not quite right.
Fighting battles with eczema that many face
Peter: Now it's easier than before, I am so embarrassed and ashamed of my condition that it cripples me. But seeing the pain I go through and just imagining how other people with the same condition as me go through I'm so inspired to let them know they are not alone.
My goal is to impact one person with eczema
Ashley: At this point in my life, it is not "hard" or challenging to share my experiences with eczema. I am no longer afraid of what other people think of me or how many likes I get. I share my story with the intention of having at least ONE person understand or relate to what it is I'm going through. If I impact ONE person, then I did my job.
Writing about eczema got easier with time
Karen: My only personal experience was about a decade of atopic dermatitis while living with the Hepatitis C virus. When the treatment ended, so did most of my skin problems. It was easy to talk about my personal skin problems because I've had a website for Hepatitis C. I've been talking about everything related to Hepatitis and cirrhosis for almost 10 years now. At this point, there are no secrets, although challenging and painful topics can be tough.
The less personal parts of eczema are the hardest
Harrison: It is not hard for me to write my eczema experiences. Fortunately, I grew up with family and friends who were understanding and did not judge me. The most challenging part is sharing my personal stories, backing up with facts and case studies, yet to find out fellow readers do not actually take action - which is not of their fault but the lack of hope and guidance, accurate information, and the deep-rooted issues in the public health system.
It's hard to relive the pain and suffering
Jude: Being completely vulnerable and sharing about the darkest hours and to relive the pain and suffering. I try to write about the gifts and the blessings and sometimes it's challenging to hold both of those experiences because ultimately, let's face it, I'd much rather live my life without eczema.
Many factors go into how challenging writing can be
Linette: Yes, sometimes it can be triggering. It just depends on the topic, how recent the incident was, and how severe the incident was. Also depends on the medium and how long or short I’m expected to write.
I do my best to help others with their skin struggles
Jeff: It can be. As open as I am, there are certain aspects that are difficult to talk about. Over the years, there have been many emotions that have surfaced due to issues with my skin and complications that have made life more of a challenge. Despite this, I do my best to convey my experiences in a relatable way in hopes that they might inspire others and help them move past their skin-related struggles.
It's hard, but it's worth it
Raelle: It is hard. When I was still healing from my worst flares writing was a release and a way to process my experiences. As I've gotten better having to replay some of the traumatic events and emotions in order to tape into my genuine story it has gotten harder and takes much time and thought. Once I finish an article it is always worth it.
Editorial Note: If you are interested in writing for and connecting with other eczema patients on AtopicDermatitis.net, please e-mail us at firstname.lastname@example.org.
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