Let’s cut to it — I’ve been struggling for a bit now. It’s been about 3.5 weeks of dealing with this harsh, and seemingly unwarranted, flare.

First it was my face and neck, the usual places that give me trouble, and then my hands and arms got worse, the redness and dryness surging on pieces of my body that haven’t seen TSW in some time. I’d say it’s frustrating, but it’s so much more than that.

A dear friend, who also has TSW, was messaging with me this past week. She and I usually exorcise our deepest thoughts with one another: our wins, our love life, our family and work quibbles, and every once in a terrible moon, TSW flares. She and I are flaring at exactly the same time, which feels anti-serendipitous, but the gravity of this aligning creates such thought-provoking conversation. So many things occurred to me, or at least resurfaced. 

I realize this moment we are living in, this apocalyptic unveiling, has touched thousands of lives. Most of us are either mandated, or at least advised, to self quarantine. That means staying inside. That means no outside visitors. That means no family and no friends. That means no venting sessions on a barstool or liberating nights out to relinquish the week’s worries. That means no gym classes or free weights to drop your anxiety and find your peace.

We are now stuck at home. The people you live with have become permanent fixtures. I dare say, being on 2-3 weeks of this self-quarantining, people seem to equate staying home as a prison sentence. They pine for the outdoors and they thirst for social interaction. They feel trapped, secluded, scared, depressed, and most of all, anxious.

When will this be over??? When can I finally leave??

It occurred to us, during our conversation, that this was our normal for so long. Almost every TSW sufferer has had to postpone their life and stay inside away from the world, drinking in only tech entertainment or words from a page. Our normal is everyone else’s batshit crazy. We never knew when we’d be better — be able to leave — and yet it is still our reality. This flare has showed us that our bodies still hold us captive.

When will we be healed??? When will we know our sentence ends??

So as I’ve had to work from home, still interacting with people through internet mediums and memes, and I can’t help but feel that bug of envy crawling under my skin. Maybe that’s why I’m so itchy all the time. The PTSD of reliving these bars, having to sit back and be trapped in this quarantine that could have SO MANY personal positives, yet everyone uses this time to wile away.

My skin is painful, and the emotional toll is worse. It’s like having a newborn sewn into your very fabric. You never know what to do — what will make it happy, get better, or keep it from getting angrier. You get desperate, slathering yourself in different lotions and potions. You start watching everything you eat and drink, depriving yourself of things like an adult beverage or the sugary sweetness that follows dinner. You push through the tiniest work out, your body burning, yet hoping it will help dispel toxins and shake stagnant lymph nodes. Something will have to give, turn you in the right direction. Yet, every morning is Russian roulette. And it feels shameful. Our skin may be tearing, bleeding, shedding, but it’s our hearts that are most torn apart. We hold tears back, being veterans to the psychological beating. The yo-yo of getting a taste of “normalcy” and then being thrown back into the lion’s den. We ache and fiend and embrace the jealousy we feel just wishing we could be someone else with healthy skin. It’s skin that is always taken for granted.

And what I mean by envy is — to everyone who doesn’t know the pain of a chronic illness

— stop. Stop and be so very grateful for your health. Not just grateful, but act on that gratitude.

I hear about so many people wishing they had time to workout. “Never enough time.” Well, there is no excuse now. You are literally trapped inside. Yet, so many people aren’t taking advantage of this. I am angered, honestly, some days when I sit in my pain and think about what I would give to be able to work out and NOT stop due to skin pain. My muscles are not the first thing to fatigue. I’ve actually gotten up a few mornings to do mini workouts, as well as do a social distancing walk/jog with my boyfriend. The heat melts my skin (South Florida weather), or if not the heat, my sweat stings. There is a constant barrier that doesn’t allow me to be my best, fit self. It’s a barrier out of my control. Yet there are so many who do have control over their health and whether or not they get out of that bed or get off of that couch, and it kills me — the laziness and lack of drive for something that can totally be reached if only people would truly mean what they say. There is always an excuse. However, on the flip side, I follow so many instagram accounts of fitness beauties who work hard, train hard — some have families, some are individual badasses — and I spend more time melancholy, obsessing over their luscious skin than I do watching their workout. Or if I like the workout, I’ll save it for that “rainy day” — the day I’m better. The day that may never come.

And sadly it’s not just the harder, exerting activities (like working out) that give me trouble. You’d be so surprised at the simple, everyday movements we all take for granted that give me, and others, such anxiety.

Our mornings are filled with dread, wondering what we will have to fix in the mirror. Sometimes the thought of having to go infront of a mirror gives me stress. I don’t want to look at this reflection, someone I haven’t genuinely recognized in over 5 years. My punishment for listening to a health professional. Just imagine, someone you care about laying beside you, and you have to get up extra early in order to fiddle with your face or body, pick away the parts that are falling off, moisten the parts that are still clinging on, to then be able to feel comfortable in giving them a morning kiss or cuddle. Then, instead of looking for something in your closet that gives you confidence, you have to find something that your skin dictates as acceptable.

Do I need a long sleeve? Does it need to be lighter colored today because I’m shedding a lot? But, will I get too hot if I put a short sleeve on and then a jacket? Maybe a light jacket? Oh, but my skin around my breasts hurt so do I need to find something to hide the fact I can’t wear a bra?

And then comes the hair and make-up. My face is really red so I should use cover up. But wait, it’s also flaking a lot and if I put foundation on, it’ll just flake off. So I just be red? Yeah, ok, red it is. But, let’s try a little mascara – yeah. That’ll help a little. Okay, hair. Uh, my neck is so bad. Should I wear it down to cover it? But then will my moisturizer make my hair stick to my neck? Make it greasy? Damn, okay, then put it up. Well, my scalp is a bit dry so I need to apply moisture to the sides and base. Jeeze, just put it in a ponytail and call it a day.

By this time, you are already so exhausted, most likely having woken up two times earlier than anyone else so you can quarrel with your skin, trying to pull yourself together physically and mentally. You must psych yourself up, pep talks about leaving the house, or even just the room. You finally tell yourself you look fine, you probably looked worse the day before, so you’re good. What happens? Someone’s always gotta make a comment —

You okay? You look a bit red? You having a flare? You having a break out? Followed by the sad look of concern, and perhaps even a suggestion.

Any confidence you had is gone. Out the door.

Let’s move on to food. While I’m flaring, I am always thinking about what I’m putting into my body. It’s the ONE thing I can control, but again, I have no idea what will actually help. I’ve cut out sweets and alcohol this week, even though the people around me are happy-go-lucky, partaking in each. I’m a teacher… working from home… I deserve a drink each and everyday. But I am trying my best to do what I can for myself, despite feeling left behind in the quarantine happy hours.

And. We. Always. Feel. Left. Behind. FOMO at the highest degree. But we don’t want to miss out. We are filled with despair when our skin withholds us from certain enjoyments, certain activities, and certain gatherings.

Another is the comments, which seem so ordinary and non-provoking, but they can set off an avalanche of anxiety, insecurity, and quite frankly, shame. For example —

My clothes. I am not anywhere near as put together or styled like I used to be since my skin is my artistic director. I also have been sporting short sleeve shirts with a jacket since my arms are atrocious. Well, since I’m in South Florida, I get the, “Omg! Aren’t you hot! Why don’t you just take the jacket off?” — dig, dig, dig. Wish I could take it off. But I’m not able to relax and be in the usual Florida attire unless my body is giving me a particularly good week or two. I feel like a trash bag, hiding this garbage body underneath. Which moves me to looks, in general. I’ve heard multiple people, men and women, judge other women so harshly on what they look like. And when I see the women they are referring to, my mouth drops. They are usually perfectly attractive. So, in my mind, what does that make me? Am I hideous to them? We are indefinitely inundated with images and music videos of these voluptuous, fully dolled up women that we are somehow measured against — most of them having plastic surgery, layers of make-up, and not to mention photoshopping and filters to the point where, if I met them in person, I’d see a completely different human being. It eats, and eats, and eats at my self-confidence. I look nothing like those women, not even close. I am someone who is fighting for normalcy, begging for a day to look in the mirror and feel attractive, physically.

Take all of this, this shame and hiding and anxiety, and add feeling like a burden. To brave the world at times when all you wish to do is be cuddled by covers in the comfort of your bed. To shy away from big crowds, or loud music, or bright lights. To choke back a break down so you don’t disappoint loved ones. To push through even mundane tasks like making dinner, cleaning the dishes, or taking a shower (yes, taking a shower can even be a painful event).

So, if you have perfectly stable health, going about your day, please keep in mind…

There is someone who aches the second they open their eyes til the moment they rest their head at night. And even then, some can’t sleep through the night.

Use that. Tell your body thank you every morning you’re able to dart out of bed to begin your day. Say thank you while you’re basking in the shower while someone else may be wincing in pain, wondering if they have to buy some special shower head in order to soften their water. Say thank you on your sweaty run in the hot sun when someone else may be forced to stay in doors with no other option but to be covered in bandages or blankets. Say thank you when you’re snuggling into your bed at the end of the day without having to soak in a bath beforehand to assuage your screaming skin or turn on a humidifier in order to help your skin not dry out in the night. Be thankful. Act thankful.

We are all so wired to complain, to be unaware of what we have or have control over. Sit down, with all this time we have, and make a list of 5 things you are grateful for — just 5 things. Even in my weariness and times of really striving to dig deep, blowing air in these vital floaties, I consistently remind myself of my treasures. I could have so much less and be so much less. And I also try to remind myself that even if I lose more things I love around me, that I will be okay. Even if I feel like a burden, I am not worthless or not deserving of the love I give.

I feel the least like myself at the moment, but I think a little pick me up and “me time” is in order, to stop hating on what my body is doing and cherish what it still can do. My boyfriend told me I should make a video, one of my just dance it out ones since, when I’m most down, dancing makes me happiest. I might just do that this week… spread a little love. Be a little vulnerable. Give a little heart in this crazy and contained time.

And remember, to be happy doesn’t mean you have everything. I certainly don’t have everything, but if I don’t focus on practicing gratitude, I certainly won’t have happiness. It’s a mindset, a nature.

I’m not happy I’m in pain. I’m not happy feeling like a burden. I’m certainly not happy dwelling on the image in the mirror or the skin on my body.

But, I’m happy I can feel pain because it makes life worth fighting for — it reminds me I’m still breathing and that there is work to do.

I’m happy because I am. I stay busy, hands cooking on this computer, feet shuffling on a floor, mind falling in love with ideas and concepts meant to be built because happiness is not a destination — it’s right now.

Use the now. Use the space you are stuck in. Don’t waste this time. We have people dying around us and health care workers putting their lives on the line everyday, praying they aren’t next in the ticket line. Stop focusing on what you aren’t able to do and embrace the things you can do — because it’s a lot more than you realize. 

Love, B. R. Banos