A wonderfully positive blog from Briana Banos, director of Preventable: Protecting Our Largest Organ, reflecting on her five years of topical steroid withdrawal, and the challenges and gifts it's given her.
At 5 years of dealing with Topical Steroid Withdrawal, you truly hope those words can resonate within you. It’s not a luscious ride, but you can gain some precious perspective from it.
I’ve learned that there are some inevitable accompaniments to TSW: loss and mental exhaustion.
The loss is the most impacting. Loss after loss. Depending on your lifestyle, some losses are worse than others: loss of self, of control, of love, of your career, of your friends or family… you name it, it’s on the table. You’re going to be at your worst physically, which is already debilitating, and then you’re going to have to endure these things, either one by one or altogether, fading from your life.
Briana in her first year of TSW
And that’s where the mental exhaustion sets in. This condition is not linear. It goes up and down and up and down, over and over for some people. There is no set time frame for healing, leaving no light at the end of the tunnel. You are just in darkness until, one day, the darkness lifts. The physical pain in the beginning may be traumatic, but the true trauma starts when you begin hitting those flare stages, when BAM, you are knocked down out of nowhere and have to, once again, navigate how to handle yourself when you’ve been trying to lead a normal life. All of your energy is put into your health. Will this work, will that work? Do I have enough money for this treatment, or that one? Is this doctor visit going to be pointless because they are just going to roll their eyes and make fun of me?
It is exhausting.
Now, these two things can make anyone who just wants to be left at rock bottom too afraid to start climbing back up the ladder. You feel lost and alone and filled with deafening grief. But, that’s not how I want to live my life. And neither should you.
When it came to heartbreak, TSW really did a number. My marriage turned to shambles just as I ventured into a new job and began fundraising for my documentary (Preventable: Protecting Our Largest Organ). I felt mentally abused, let down, and sadly, I lost all my confidence. I would have nightmares about being with other people. There were nights I would wake up, petrified of having to start over alone, knowing that I barely loved myself, so how on earth was someone else going to accept all these physical flaws and ailments?
But they will. You just have to let them. Looks fade. Things happen and aesthetics can be lost in a heartbeat. But things like a beautiful soul, endless silliness, and loving loyalty and compassion — that stays. That’s what people fall in love with, and we have to let them. Don’t settle for less than you deserve simply because you are going through something you can’t control.
You deserve all of someone because you should give them all of you. Don’t hide. You are enough. You are worthy of so much love.
What was lost, and what was gained
I lost my career as a performer, as well as the opportunity to be a personal trainer. When I had to concede and start working as a substitute teacher, it was scary. I’d had almost 2 years of seclusion away from the real world, and was suddenly shoved into an atmosphere full of raging teenage hormones and kids galore, and given responsibility that only provoked massive anxiety. I didn’t want to make friends or talk to people, scared of their judgment.
But I realized that being vulnerable and open gave me the power to overcome some of my dread. I still have trouble looking people in the eye or being out in certain public situations, but allowing people to see all the ugly pieces of yourself and letting pride go is amazing. It’s amazing because you will see what a difference it makes with your relationships and conversations and connections with people.
How you deal with the heartbreak, the mental exhaustion, and the loss is up to you. You can throw a constant pity party, or you can actively create a new and better ending. Find something worth getting up for in the morning. Explore books and new ways of thinking. Own up to your part in your story, because we may be going through something that is out of our control, but we can still fight and win. Not everyday may be a win, but we can make it the best it can be.
Photos of Briana, 5 years on from the start of TSW
We should breathe all of life in, the good and the bad. Everything can be a lesson. I don’t know if I believe in the saying, “Everything has a purpose,” because I think we give it purpose, no matter what it is. It’s our responsibility to take each situation we face and find the gravity of it; to figure out a way for it to be useful in our lives.
Five years. You have taught me so much.
That compassion is built in the hard times. That love is meant for me. That I will always hit my goals, no matter how big, because fortitude lives in these veins. That being vulnerable comes both with mar and magic. That being open is the only way I wish to live. That I still have a good climb left before I am out of this valley.
But… that is life. It is my life. I am always going to make the most of it.