When Your Heart Races, #4

My dear one,

I wanted to write to you today about something that doesn't show up in a photograph but shapes nearly every hour of your day. The way you stand up from a chair and the room tilts sideways for a second. The way your heart takes off running before you've even decided to move. The way a simple trip to the mailbox can leave you gray faced and shaking, holding onto a doorframe like it's the only solid thing left in the world. I know what it costs you to stand in a line at the store, or to get up too fast from the couch, or to sit through a hot afternoon without your whole body starting to spin. I see it, even when you're doing everything you can to hide it from the people around you.

What you're carrying has a name, POTS, postural orthostatic tachycardia syndrome, and it is a real, measurable thing happening inside your body. When you stand up, your heart rate can jump thirty beats a minute or more within just ten minutes, sometimes climbing past a hundred and twenty, while your blood pressure doesn't rise the way it should to keep up. Your body is doing math it can't solve fast enough, trying to push blood back up against gravity with a nervous system that isn't cooperating. That is not you being dramatic. That is not you being out of shape or anxious for no reason. That is your autonomic nervous system, the part of you that's supposed to run quietly in the background, struggling to do its job. And I want you to know something else too, since you live with EDS. This isn't some rare, unrelated thing happening to you on top of everything else. Studies looking at people with hypermobile EDS have found that somewhere between thirty and eighty percent of them also carry some form of dysautonomia, POTS most commonly of all. Your looser connective tissue and your unpredictable heart rate are more connected than most doctors ever explained to you, and you are far from alone in this particular corner of the illness.

I know the fear that comes with it. The fear of standing up in front of people and wondering if today is the day you actually go down. The fear of planning anything that requires standing in one place for very long, a wedding, a graduation, a simple church service. The fear of trusting your own body after it has betrayed you in public more than once. That fear is not weakness, my dear one. It is a completely reasonable response to a body that has taught you, again and again, that it might not hold you up. I won't tell you to just relax or stop worrying about it. I'd rather sit here with you and say, of course you're careful. Of course you scan a room for the nearest chair. You've learned that the hard way, and learning it doesn't make you fragile. It makes you wise.

There's grief tangled up in all of this too, and I don't want to skip past it. Grief over the version of you that used to stand in line without a second thought, that used to dance at a wedding without calculating the risk first, that used to trust a fast heartbeat to mean excitement instead of dread. There's a particular kind of loneliness in a body that fails you in ways nobody else can see, where the outside world just sees you standing still, maybe a little pale, while inside your heart is slamming and your vision is going gray at the edges. You're allowed to grieve that. You don't have to pretend this is easy or that you've made total peace with it. Some days you haven't, and that's alright.

But I also want to hold up something true right alongside that grief, because I never want to leave you sitting only in the hard part. There is real gentleness available to you here too. Many people with POTS find it helps to talk with their doctor about things like increasing fluids and salt intake, wearing compression garments, or rising slowly instead of jumping straight up, since a slower transition gives your body a little more time to catch up. None of that is a cure, and I'm not telling you what to do, only that it may help, and it's worth a conversation with someone who knows your particular case. You know your body better than any stranger passing you in a hallway ever will, and you're allowed to keep learning what helps you specifically, one small adjustment at a time.

I think about you sitting in a folding chair at the edge of some family gathering, not because you don't want to be in the middle of things, but because you know standing too long will cost you the rest of the evening. I picture myself pulling up a chair right next to you instead of leaving you out on the edge alone, because being near you matters more to me than where in the room we happen to be sitting. That's the kind of presence I want this letter to be too. Not standing over you telling you to push through, but sitting beside you, right where you actually are.

There's a verse I kept coming back to while I wrote this letter, from the book of Isaiah. God says, "Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10. I love that word uphold. Your body may not always hold you up the way you wish it would. Your legs may buckle, your vision may swim, your heart may race off ahead of you without asking permission. But you are being upheld by something steadier than your own nervous system, a hand that never gets tachycardia, never has to sit down and catch its breath, never once fails to hold on. That's not a promise that your POTS disappears. It's a promise that you are held, even in the exact moment your body isn't holding steady on its own.

I want you to remember, on the days your heart takes off running for no reason you gave it, that you are not failing. You are living faithfully inside a body that asks more of you than most people will ever understand, and you keep getting back up anyway, sometimes literally, one careful, slow rise at a time. That's not weakness. That's a kind of quiet courage most people never have to practice. I see it, even on the days it feels like nobody else does.

There will be good moments in the middle of this too, and I don't want you to miss them while you're bracing for the next dizzy spell. The afternoon you make it through a whole family dinner sitting comfortably the entire time. The friend who, without being asked, quietly slides a chair over to where you're standing. The small triumph of a slower morning routine that actually leaves you steady enough to enjoy your coffee instead of gripping the counter through it. Those moments count. They are not consolation prizes. They are real, good pieces of a life that is still yours, racing heart and all.

So today, if you're moving carefully, scanning for the nearest chair, taking the stairs slower than everyone else, I want you to hear me say this plainly. You are not failing at being a person. You are managing a real, physical condition with more grace than you probably give yourself credit for. And underneath your unsteady legs and your racing pulse, there is a steadier hand than yours holding on the whole time. You are not falling alone. You never were.

Love, Dad

A prayer for you today.

Lord, thank You that You never lose Your footing, even when her body does.
Where her heart races without warning, calm the fear that rises with it.
Where she feels dismissed for a condition others cannot see, remind her that You see every beat, every dizzy moment, every careful step.
Uphold her, Lord, with the steadiness Isaiah promised, especially in the seconds she feels the room begin to tilt.
Give her wisdom in the small daily choices that help her body, and patience with herself on the days nothing seems to help enough.
Surround her with people who will pull up a chair instead of asking her to keep standing.
Let her feel Your strength holding her up even when her own legs cannot.
Thank You for being her steady ground on days her body has none to give.
In Your unshaking, faithful name, amen.