To Those Who Stay When My Body Breaks
TSW, caretaking, and the grief of being a burden
I think one of the hardest things about Topical Steroid Withdrawal (TSW) I’ve had to grapple with, and still do – almost daily – aside from the pain, burning, itching, sleeplessness and even shame is knowing and seeing what it does to the people you love around you.
The people who stuck by you from day one, and the ones that walked in and decided to stay, despite how difficult it gets. The people who hold you up when you can no longer hold yourself up anymore. Who help you carry the weight when you’re feeling crushed under a mountain of it all.
They help you with compresses, ice, and they hold you. They try not to cry in front of you, because they already know you’re at your limit. So, they suffer in silence too.
A few weeks ago, my mom came back early from a long trip to Europe.
She cut it much shorter than planned because I was flaring so badly I could no longer take care of myself. Not only that, but I felt my mind going to that very dark place, where I wished I could just go to sleep and not wake up in the morning.
I didn’t ask her to. But this time, unlike times before when she offered, I didn’t stop her either.
And it killed me.- Because I saw how happy she was over there, and I know if it wasn’t for me, she wouldn’t be here right now. But as the saying goes (and I find it 100% true) – “You are never too old to need your mom.” And I definitely needed my mom.
Even as I continue to flare and my hands are burning, cracking, oozing, and itching as I type this, what hurts most is the deep seated feeling of guilt within me. The guilt of needing her here, of ruining her trip, of being the reason she couldn’t continue to rest there and experience more joy.
TSW doesn’t just attack your skin. It destroys everything. It attacks your relationship and causes pain in others around you who never deserved to bear it.
It makes you feel like a burden to everyone around you.
In my case, to my fiancé, who was just here a few months ago also taking care of me for the first time in a horrible flare, and who tries so hard to help every single day. But no matter what he does and how much I know he wishes he could, he can’t fix or change what’s happening within this body.
To my parents, who love me with every ounce of their being and have stood by me from the beginning of this journey, but sometimes show it in complete emotional withdrawal or overwhelm.
And to friends, if you’re lucky to keep any on this journey. More often than not, they disappear, and you’re left wondering if they were ever a friend to begin with.
The truth is, you feel like a weight that no one signed up to help carry. They just had it dropped on them, and deal with it every day.
And that weight – that deep, deep grief – is something no one could ever prepare you for. It’s something I still feel looming around me, whether I’m having a better or worse day.
No one can teach you how to be a “good patient”, how to at least be bearable, when the suffering is this extreme. When it takes over every part cell in your body and every part of your being.
There’s no guide for how to be the person you used to be when every single inch of you hurts – inside and out. And the truth is, you can’t be the person you used to be. That person is long gone. You are just standing on the threshold between the person you used to be, and the one you’ve yet to become.
There’s no easy way to say to the people who love you:
“I’m sorry I’m still not better.
I’m sorry I keep needing more from you than I ever wanted to.”
But underneath that guilt, there’s another truth. One I’m trying to hold onto:
I didn’t choose this.
And neither did they.
But love is choosing anyway.
And I’m incredibly grateful to still have love in my life – love that chooses me, even when it’s indescribably hard.
To my mother, who came back early—thank you.
I know how much it cost you to come home, and I don’t just mean financially.
But I also know I wouldn’t have made it through that week and this month without you.
To my fiancé, who stays even when I can’t offer much in return—thank you.
You’ve seen me raw, red, itching and scratching, screaming and crying at the top of my lungs in anguish and pain – and you didn’t look away once.
You stayed. And you continue to stay. Even when I push you away, afraid that my love will weigh you down, that it will destroy you somehow, you stay.
You stay, and you love me through every day – whether it’s easy or hard, whether I’m laughing or crying (like I have been right now writing this… ha). And that is the purest love, and purest medicine, that keeps me going.
To anyone loving someone with a chronic – whether invisible or visible illness:
You are carrying a form of grief no one sees. And you are doing it with such grace. There is so much beauty in that.
And to those of us who are still going through it – whether flaring now again, or in the midst of the hardest of it, who feel like we’re asking too much just by being here, just by existing, please remember …
You are not a burden.
You deserve all the care and love you and your body need.
That is not something to be ashamed of.
It is simply human.
