Navigating A Chronic Skin Condition: My Personal Journey and Why Sharing Matters

Living with any skin condition can be an excruciating journey, fraught with physical pain, emotional challenges, and a profound impact on one’s quality of life. As someone who has experienced this firsthand, I understand the complexities and hardships associated with Eczema and Topical Steroid Withdrawal. In sharing my story, my hope is to shed light on this often misunderstood condition and prevent this from happening to as many people as I possibly can.

Eczema has been a part of my life since my teenage years. I’m turning 30 this year, and it’s hard to wrap my head around how much life Eczema and TSW have robbed me of. When I was dealing with eczema flares, I did what most people would think to do: visit your dermatologist. But unfortunately, my dermatologist’s approach was to prescribe me steroids that seemed to be helping, but all they did was mask my symptoms. What I didn’t know as a teenager, was that those steroids that I thought were my friend, would ultimately lead to TSW.

TSW occurs when individuals develop a dependence on topical steroids, leading to a myriad of withdrawal symptoms upon cessation of use. What begins as a seemingly obvious and easy treatment for conditions like eczema or psoriasis can quickly spiral into a debilitating cycle of dependency and withdrawal. For me, the process has been nothing short of agonizing.

TSW looks like 3 letters on paper, but to me, TSW is much more than that. Beyond the physical toll, TSW has taken a profound toll on my mental well-being. The visible effects of the condition have left me feeling incredibly self-conscious and insecure. Simple activities like going out in public or socializing with friends have become sources of anxiety, as I grapple with the stares and questions from others regarding my appearance. The emotional toll of feeling isolated and misunderstood only adds to the already heavy burden of TSW.

It’s the worst pain I could ever imagine – my skin being on fire, constantly flaking off, revealing raw, red and bruised skin. It’s not being able to spend quality time with friends and family – because even when I built up the courage to reveal my face to the world, I was uncomfortable and disgusted in my appearance. It’s not being able to look in the mirror, still, almost 2 years later because I am terrified of my reflection. It’s depression – days of not getting out of bed until the sun went down, crying in my partner’s arms wishing I could just end it all. It’s not being able to sleep or shower, it’s the crazy diets we suffer through in desperation for some relief, leading to extreme and unhealthy weight loss. It’s the financial burden, the toll it takes on our careers, and truly so much more.

However, amidst the hardship and pain, there is a glimmer of hope found in the power of taking control over my own health and healing journey. This condition has made me a stronger person, and it’s filled me with a sense of empathy for others dealing with any hardship in life. By speaking out about my experience with TSW, I aim to break the stigma surrounding this condition and offer support to others who may be struggling in silence. Sharing our stories not only helps to raise awareness but also fosters a sense of community and solidarity among those affected by TSW.

Connecting with others who understand the challenges of TSW provides me much-needed comfort and validation, reaffirming that our experiences are valid and deserving of recognition and support.


About the author

Michelle Sansiveri