My fingers have been itching to sit at this laptop and configure words that may possibly, eventually, make something of all the clatter and noise inside my head.
I’ve been thinking about the Topical Steroid Withdrawal community a lot. For two, really two and a half years, I had toiled over a documentary that I finally shared publicly last March. I am also about to hit 5 years of TSW in a mere 22 days. I get this nagging feeling that I haven’t done enough for sufferers, or for myself. There is always something to fight, to battle, to overcome. Just mountains upon mountains. It can drown and rattle even the most fortified character.
TSW is like that — like scaling a mountain, a great, gigantic mountain with cliffs and tiny ledges and slopes and chimneys. There is always an obstacle ahead no matter how far you climb. I started thinking about this while watching Free Solo. It’s a documentary about Alex Honnald, a man who climbed El Captain in California without using a rope. It took attempt after attempt while using safety measures before he finally dared to climb it with no security. I sat in my chair, clutching my little glass of water, as I watched him tackle every point on the mountain that could have left him falling to his death.
Well, imagine someone pointing to that mountain and going, “You must go climb that”. No understanding of how to climb, no true answers as to what may or may not be coming — just a few hints here and there. You are terrified, but you know if you don’t climb it, you’ll just be further and further away from what you need to actually survive. And as you start climbing, people watching you below, some thinking how crazy you are, some cheering you on, some telling you what to do or how to do it even though they’ve never climbed the mountain before, and some telling you you’re wrong to climb the mountain. You feel so alone, and you’re trying your best. And every time your foot slips or you end up tumbling down (metaphorically), knowing you have to get back up and keep going no matter the set back or the amount of voices you hear telling you their opinion… it’s physically, emotionally, mentally, and financially exhausting. Sometimes you even question why you are climbing this shitty mountain to begin with, just wedged between literally a rock and a hard place, contemplating to jumping off all together.
That is TSW ladies and gentlemen. It was right there, staring at me on the television screen.
We go through so many emotions, an amalgamation of defeat, loss, hope, faith, strength, anger, betrayal, the list goes on. The physical ups and downs, the intricacies of fact vs. what most doctors say to our face, the push back, the mental fatigue — it is unfathomable how someone survives all of this. We are definitely changed by it, good and bad. They say trauma lives inside us and I know my own haunts me everyday, in the mirror and in my head. I don’t want to be haunted anymore.
So I will climb. Always. I will cry doing it. I will bleed doing it. I will study the shit out of the mountain until I can find some way, some solution, to getting all these poor souls forced to climb this mountain up and over and through til the end. Will I grow weary on this journey? Sure. Will I need a break sometimes? Most likely. But as long as I am dangling alongside everyone, there is no reason not to fight for my fellow climbers.
And so, I leave with this — 20 things I’ve learned about myself and about battling through a chronic condition these past 5 years.
1. You are not alone.
No matter how small or tortured you feel, there are others who can relate. Lean on each other.
2. ITSAN is your friend
I will defend this courageous team and all the efforts they have made to ending our suffering. Over these years I have personally gotten to know most, if not all, of them. The amount of time, research, and advocacy they put into this non-profit is astounding, and only a FEW get paid to do this — and not anywhere near what they deserve. They deserve our support, verbally and financially. My documentary wouldn’t have been made without all of the research I found through them, and also the encouragement they offered when I felt lost and alone.
3. Doctors aren’t always right
You desperately wish to sit in a room where a knowledgable human donning a white coat will be able to give you all the answers, and there is just no such thing. If you are lucky, you will find a doctor who is brave enough to say, out loud, that they don’t have all the answers but will work and fight alongside you. That is gold.
4. The beginnings are the hardest, physically
Most people will experience the worst physical pain of their lives at the beginning. Whether it takes months or years, the physical pain will lesson over time with perhaps flares in between, but nothing as horrifying as the very beginning.
5. The beginnings are not the hardest, emotionally
Solely my opinion, but my mental fortitude was much stronger at the beginning than it is now. It’s like holding a one pound weight straight out in front of you. It’s not bad at first, but as time passes, it gets heavier and heavier. It’s the same weight, but time makes it much harder to bear.
6. It’s vital to get help
If you are feeling suicidal, or are even just emotionally drowning, it is imperative to reach out and seek help. Don’t sit alone in those thoughts. You deserve to be heard, cared for, and be here.
7. Not everyone will understand
This is one of the craziest medical conditions I have ever seen, and we are just so lucky in getting to experience it (sarcasm). Friends, family, doctors, partners — they may not see eye to eye with you. It’s painful, but that’s the truth.
8. And you will lose people
Dammit, this one kills. People you love will leave. And if they don’t, cherish them forever. Just remember, you are stronger than you think. If people leave, it says more about them than it does you.
9. People mean well
One thing I do not lack in my life is support, which is a blessing. I have plenty of people around me who cheer me on and send me love from a distance, and some people will often times try and give you advice or their opinion or some remedy that worked for their skin. I get it, it’s so taxing after awhile, but they mean well. They just want to help.
10. Show people how to help
Tell people! Those people, the ones who are curious to understand and lend a hand, show them how! If anything, point them in the direction of the documentary. Hopefully just that in some way can point them to a better understanding of how shitty this condition is and how to better approach you on an off day. Or, if there is something specific — like a cream, lotion, special care product, food, etc — that you need to get you through this, give them that information. You will be surprised at how generous and amazing some human souls can be in your time of need. (Pay that forward, too, whenever you are able!)
11. Doctors are not the enemy
Let me say this louder for those in the back — DOCTORS ARE NOT THE ENEMY. I get that we are enraged at the medical community’s lack of awareness or, quite frankly, care sometimes when it comes to our condition. I will never forget the eye roll I received in an allergists office and the strength I had to muster with tears forming in my eyes in order to speak to her firmly and steadfast that this IS a condition and I would not sit there and be treated like a child. It’s tough. But realize, most of these doctors are taught to praise this drug — topical steroids. We need to find ways to work together with them. If not, we will always suffer. Is it fair that we are the ones who have to advocate for ourselves? — f**k no! Absolutely not. That is a huge let down for us with most doctors. But don’t give up on them. They are human, too.
12. Using pharmaceutical drugs is okay
If you are struggling, and you truly feel like you can’t go on, do NOT feel ashamed at using pharmaceuticals for assistance. There are drugs for itch like xyzal and ataraxic. There are drugs to help you sleep through the insomnia. There are immunosuppressives, like Cyclosporine and Methotrexate. There is even Dupilumab now. All of these drugs are here to help. Do they have side effects? Yes. This is where your own decision making skills will be needed. But they ARE available. The only one(s) I would tell people to be wary of are Protopic and Elidel. I used one of these, on top of using the steroids, and they say these ointments (they are immunosuppressives) may also be acting as a topical steroid and, too, may cause a withdrawal process. In my documentary, near the end, I discuss how there is a gene mutation some possess (like myself) who do not properly detox from this drug. CYP3A4 I believe is the gene.
13. It’s great to share your experience
I highly encourage this. Sharing our stories is amazing! Spread awareness. If people are asking for advice and you feel like sharing something that you feel may have helped, go right ahead. We all know we aren’t medical professionals, but we know our bodies and this condition, and any little help you may be able to give someone who is suffering could be a blessing for them. However…
14. It’s not great to belittle people who don’t share your same views
Last I checked, no one is an expert at this. When you start to demonize other ways of coping through TSW and deem your way as the end-all-be-all, you are creating a negative picture and perhaps even a dangerous downslide for our community. Tons of people are out there chomping at the opportunity to discredit us. Don’t give them a reason to do so. We are all still learning and growing with how to handle this condition.
15. Carers struggle, too
Major. It can be extremely tiring, emotionally, taking care of a sufferer. They most likely become the breadwinner if you have to quit your job. If you have kids, that’s an extra burden. If you’re not able to help around the house, or offer affection, it can weigh heavily. They most likely feel responsible for being the put together one, the lighthouse in your storm. Remember to be gracious, kind, and understanding of their suffering. It may not be the same as yours, but it suffering.
16. Nothing will get done if we sit and wait for it to happen
I get that sharing your story or speaking up is petrifying. Most don’t want to, and I don’t blame you. But please understand the longer we hide, the harder it is in the end for us to end this suffering. We are the ones who need to take responsibility most days into our own hands. We are the knights to slay the dragon. If we just suffer in silence, who wins? Be gracious in sharing your story. Show the medical world that we may be angry, but our hearts aren’t hardened. We just want help and solutions — not war.
17. Find things that give you a reason to get out of bed in the morning
This is imperative. Becoming depressed is easy with this condition. The situation turns bleak very quickly and if we don’t have those positives to hold on to and to use as catalysts for us to rise in the morning, we will become shells of a human being. Fight for what you love. “Do not go gentle into that dark night.”
18. This is not linear
You are going to tumble. You are going to experience major setbacks sometimes. It’s going to punch you in the emotional gut. You’re going to cry, and break down, and want to tear something apart just so you can point at it and scream, “Look! This is how I feel!” And it’s okay to feel all of that. TSW is not linear. It will send you some good days and then knock you off of your feet. Roll with the punches the best you can. It’s a cha cha — a really messy one.
19. This will touch every part of your life
Get ready, folks. Your career, your family, your mental stability, your physical abilities, your love life, your friendship circle… it’s a doozy. Even simple every day tasks may become out of the question. Breath and take it day by day.
20. Don’t settle
I am not going to lie, this one is the hardest for me, personally. We lose so much of our identity fighting through this condition. So much energy goes into maintaining and surviving through the trauma, that we reach out for any comfort that comes our way. I know there are a few things I have been settling for simply because everything else has felt so heavy. I look in the mirror and see someone I don’t recognize. I pick and peel at my skin all day, just praying to have my self esteem and confidence back. I don’t want to settle for people or things in my life that I know aren’t what’s best for me simply because I am lonely or think less of myself in this moment. We all deserve better. What is our reflection should not allow us to dictate our worth. So much easier said than done, a battle I have faced since Day 1, but truly started to grieve once my marriage dissolved. But you gotta fight. Don’t give in to things or hold on to things that aren’t truly serving your growth and healing. Our bodies feel that and feed off of that. All this negativity courses through our veins, pumped into every organ. Let’s let it go this 2020.
Be brave on your climb to the top. Look out for each other.
My documentary, in case it’a needed:
Me at 4 year, 11 months:
Love, B. R. Banos