Finding Your Eczema Support System Could Save Your Life

I experienced my worst moments with eczema in the 1990s to early 2000s. And nearly 100% of the time, I experienced them alone. There was no Internet, no Facebook, Instagram, or Twitter. And eczema websites at the time were minimal, offering some advice about moisturizing after bathing or showering to lock in moisture and to speak to your dermatologist about getting steroid creams. I maybe knew one person in high school and one person in college who also visibly had it and most others had no idea what it was and wondered if it was contagious.

The early years

My early life was filled with much shame, mystery, and pain on more levels than just physically. It hurt so much to not only have a condition that I felt helpless against, to not have any real mastery and language around, but to also not have the kind of support system I wished I had back then to help me through the hardest times when I did feel helpless and almost ready to take my own life. Those times were very real and I am just grateful that I somehow had the spirit and will to live despite it. To believe that I could somehow transcend it someway, somehow, someday.

The importance of getting support

Reading about Lee’s suicide¹ due to severe depression from eczema in 2015 and James Snell’s recent eczema-related suicide² last October really made me think about how having a strong support system could have helped them and even myself in my darkest moments. It also made me reflect on how wonderful a world we live in now where there are so many online support groups, hashtags to find your eczema tribe, and websites like AtopicDermatitis.Net that are patient-run and give you real stories, struggles, and suggestions based on others who are going through similar issues you are. Truly authentic stories and support.

It can mean so much to know that you’re not alone in your suffering and to hear the stories of others going through it and continuing to fight and live through the pain can make it that much easier to also continue to live and be there to support others and learn and heal together. When you feel like you’re alone or a rare case, it makes it seems as if what you’re going through is not normal or common and not having others who can relate can just make you feel like you’re a waste of space being all diseased and “broken.” Finding online support groups has been really eye-opening, to just see how many people really are suffering from eczema and realize it is a much larger number than I ever knew could be possible!

Find your eczema tribe

Aside from atopicdermatitis.net, some others online support groups that are noteworthy are the #tsw #eczema #psoriasis groups on Instagram and Twitter. The people on those social media platforms are some of the most heartfelt cheerleaders and friends that I have ever met in this community. Although I’m in a good place with my eczema now, knowing that these communities are active and keeping each other going makes my heart happy that current and future sufferers of eczema will have much more knowledge, examples, and camaraderie in this fight!