After sharing my experience with you for nearly 9 years now, you’ve pretty much heard everything already, so I end up sounding like a broken record, but I don’t think there will ever be a moment of clarity that compares to the one I experienced on 6th June 2013: the day I found TSW.
Up to then, I’d spent over 10 years watching my skin deteriorate as a result of steroids (topical & oral) and Protopic. I’d developed photosensitivity, skin thinning and resigned myself to a life where I was limited by what I could do because of my skin. Every time I’d go to the doctors, they’d tell me I had ‘incurable’ eczema and the only thing I could do was ‘manage’ symptoms.
When I found TSW, for the first time in over 10 years I was given an answer - a scary one, but finally, hope.
This time 11 years ago, I had no idea how my life was going to change. I’m also quite glad because I don’t know if I could have got through the next 4 years - housebound for 2 years as a result of the debilitating physical symptoms of TSW, then a further 2 dealing with the trauma of what I’d just been through, and crippling PTSD. But for all that process threw at me, I’d do it all again because it offered me skin freedom, passion to create change and a deeper connection to my body and mind.
To anyone reading this right now who is in the throes of withdrawal, I’m so sorry that your path lead you to TSW - you’re likely in pain, both mentally and physically, and plagued by doubt, but my platform was created by someone who was you - and is still you in spirit, because TSW is with me every single day. You can’t go through something as life-altering as withdrawal and for it not to leave an indelible mark. As a result, I’ll be an absolute pest, and an aforementioned broken record, until we get much needed research, medical support and awareness so no one else has to suffer as we all have.
TSW is completely preventable. You didn’t use the medication wrong - this happened because there is something wrong with the medication.
Sending love and healing, always.
Cara x
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