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A patient and a doctor high five, sharing lightbulb moments.

It Matters When Experts Get IT

I cried when I first heard doctors speak about precisely what I was going through with eczema and topical steroid withdrawal. It was a lightbulb of excitement that turned into post-traumatic stress, mixed with overwhelming feelings that I could be close to some answers! As I was figuring out my TSW story and symptoms, there was always a great weight on my shoulder that I was the only one to understand this debilitating disease and that there were no trained doctors to help me piece my questions together.

I felt heard at Eczema Expo 2018

This revelation happened at my first National Eczema Association yearly Exposition in 2018 in Chicago. I saw that this organization and event "got it" when it came to what we eczema sufferers were going through, but also the full picture of what it takes to begin to heal and gain some peace with this disease. The doctors Aron and Leo were the main presenters who broke down red skin syndrome and topical steroid withdrawal (TSW) in a way that finally made sense! With their trained in-depth knowledge, they completely canceled out the theories of what is happening with the body when facing TSW and gave concrete answers. They were honest about what they knew and what they did not know. It was the complete transparency that I was craving.

I felt the emotional impact was validated

Additionally, my tears overflowed during the topics of the psychological impact of eczema not only on the patient but the family and caretakers as well. Years of not being fully aware of the impact of my mental health issues and my parents and older brother flashed back into my mind as the doctor shared experiences from young children who participated in family therapy because of their severe eczema. I could not help but wonder, "Where was this assistance when I was growing up?" "Is it because I'm a minority that these services were never suggested to me or my parents, or were they simply non-existent during that time of my childhood?"

The impact of provider understanding

What I do know is that I officially understood how much it matters when trained professionals meet patients where they are and that they understand the real-life stories that are impacting their lives. It matters when experts GET IT! Whatever "it" may be is very important to realize how much health professionals are needed for our healing, even if it is simply for clarity.

Doctors should remain knowledgable

I share this message to soften patients' hearts that have completely thrown out the doctor's advice and medical assistance, specifically in the western part of the world. Although I went 3-years without consulting a personal doctor one on one for clearing my eczema due to distrust in the system, I never fully disregarded where they were coming from or why they have come to the conclusions that they have in the medical field. With that said, I believe that it is the doctor's responsibility to remain knowledgeable and caring of what is currently going on in the field they practice.

We need understanding

Topical steroid withdrawal is a very logical and real thing happening to enough people around the world that there is no gaslighting or aiming blame to the patient. We all were ignorant of the extreme systems that can be as similar to withdrawing from heroin that using steroids could bring. There is not only so much information out there for proof, but also real-life examples every day and people in complete confusion. We need health care professionals to understand and get what patients are going through, even if it seems foreign or even illogical at the moment. The more we all recognize the patterns and research readily available, the more we can continue to connect and create processes to better assist many who are suffering.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AtopicDermatitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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