Behind Closed Doors

Janettie
9 hours ago
3 min read

You can’t always see what someone is carrying. I’m sharing my experience here with you to foster awareness and compassion, not to seek sympathy or pity. People often ask how I manage life with hEDS. Living with an invisible illness, in my case, hEDS (hypermobile Ehlers-Danlos syndrome), means navigating daily decisions about how I show up, how far I can push myself, and what I carry silently. By sharing my experience of life with hEDS, I hope to offer insight into what it’s like to live with an invisible illness, where struggles aren’t always visible, even when everything appears fine on the outside. If you know someone living with an invisible illness, remember that their journey can feel very isolating. Offer support when it’s asked for, and even more when it isn’t, because sometimes silence speaks volumes.

In public, I look capable. Reliable. Put together. I show up, I deliver, I smile, I keep going. What isn’t visible is what happens behind closed doors. There are mornings when my joints feel as though they’ve been assembled incorrectly overnight, unstable, painful, unpredictable. Getting dressed can feel more like a strategic exercise than a routine. Before the day even begins, I’m already calculating how much energy I can afford to spend.

There’s also a quiet kind of pain management woven into my days, between meetings or meet-ups. Painkillers are carefully timed so they don’t cloud my thinking. A constant mental checklist running in the background: Can I sit here? How long will I stand? Is there a toilet nearby? How long before something aches, partially dislocates, or gives way?

Holding myself together, quite literally, is exhausting. Ehlers-Danlos syndrome isn’t just about flexibility or joints; it’s about living in a body that doesn’t always cooperate, no matter how determined I am.

I might seem “fine”, but behind closed doors, I’m often recovering.

Recovering from pushing through.

Recovering from travel, from long days, from concentrating while in pain.

Recovering from the effort of making this look easier than it is, even when I remind myself that I don’t have to.

There’s also an emotional weight that comes with this. The guilt of needing rest. The fear of being seen as unreliable. The internal debate before asking for adjustments or saying “no” - wondering if I’m asking for too much, being difficult, or whether I should push just a little harder.

There’s grief too, and this one hits hard for me, having always been sporty and active. Grief for the body I once had, and for the one I imagined growing old with. Grief for spontaneity, for ease, for days that didn’t require constant calculation.

And yet, alongside all of this, there is resilience. The determination it takes to keep showing up. The planning, pacing, and problem-solving required just to function at a level others may never have to think about. The strength it takes to live with a condition that is invisible, often misunderstood, and frequently minimised.

Ehlers-Danlos syndrome doesn’t make me weak!

It has made me resourceful. Adaptable. Deeply aware of my limits and my strengths. So, if I ever seem tired, or cautious, or in need of flexibility, know that it’s not a lack of commitment. It’s the reality of doing my best in a body that requires constant negotiation. And this body keeps moving mountains, one relentless step at a time.

Behind closed doors, the struggle is real.

But so is the perseverance.