I’m sure that if you’re going through TSW, or any kind of skin problem for that matter, you’re no stranger to the doctor’s office. A rash sprouts up. You don’t know what’s wrong. You do a google search to see what it is. Your self-diagnosis is folliculitis, or a staph infection etc, so you go to the doctor expecting a very specific medication that will rid you of the annoying rash.
What’s the doctor’s diagnosis? “Eczema.”
“But I’ve had eczema all my life, and it’s never looked like this.”
“Well, clearly it’s mutated*. You have to control it.”
With highly potent topical steroids, of course, that “have no long-term effects other than skin-thinning. And even that’s unlikely.”
Doctors are astounding salespeople. They can sell paper bags filled with dog poop, the way they make steroids and immunosuppressants seem completely harmless. When it came to prescribing Elidel, my dermatologist said, “We use it for babies.”
A simple google search shows that prolonged use of Elidel can lead to skin cancer. This is an extreme case probably, and I’m sure there are doctors who would argue that many things nowadays can give you cancer. Just think of cell phones.
However, we don’t give babies cell phones. Likewise, we shouldn’t give babies Elidel. Or topical steroids. And if we’re not going to give these creams to babies, we might as well stop giving them to kids, too. Ditto for teens and adults. Instead, we should be actively trying to find safer ways of healing eczema. Not masking it.
But that’s the thing with most, if not all, drugs. They hurt us as much as they “heal” our symptoms. Everyone with TSW is living proof of that.
Having said all of this, doctors should still be consulted, albeit for non-TSW issues. Unless of course your doctor is amazing and actually accepts it.
When I got a cold sore, I didn’t think anything of it health-wise. I was horrified by the sight of it, but I knew it would go away. Unfortunately, as it healed, more popped up. The virus infected my eczema. THAT was horrific. It spread to my neck and cheeks, but I thought, this will go away too.
It didn’t, and I finally caved and went to the doctor. Apparently, the infection was so serious that if it spread to my eyes, it could permanently damage my eyesight. He prescribed anti-viral medication, and I gladly used it.
With all that’s happened because of prescriptions, I used to feel like I would never go to a doctor again. But after that situation, I realised that that’s foolish. If TSW is to teach us anything, it’s that we have to take our health into our own hands. That doesn’t mean avoiding doctors. That means going to the doctor when we have a problem, and listening to their medical opinion (surely they must have learned something useful in med school), while also doing our own research into their diagnosis. Perhaps that means reading about the drugs they prescribe, or even sifting through a blog about topical steroid withdrawal. We just can’t take everything they say at face value.
Another thing that I’ve learned: trust your gut. Even though you may not be a doctor, you know your body better than they do. I knew that my TSW wasn’t eczema because it was nothing like the rashes I’d had all throughout my childhood. I had no textbook knowledge of eczema, but I had knowledge from my experience.
That counts for something.
*Those were his actual words…