Working remotely with EDS, MCAS & POTS

I have a complicated relationship with my body.

On one hand, it allows me to do things I genuinely love — design, create, problem solve, make cool things for cool people. On the other hand, it occasionally reacts to opening a jar or sitting incorrectly for four minutes like I’ve attempted an Olympic-level stunt.

I live with Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) — a trio commonly referred to as the EDS trifecta.

For anyone unfamiliar:
EDS is a connective tissue disorder, meaning the collagen in my body — the thing that’s supposed to hold everything together — is faulty. Think “off-brand elastic bands from the dollar store.” Technically functional. Emotionally unreliable.

So instead of my joints staying where joints are politely supposed to stay, they move too much, hurt constantly, get injured easily, and generally behave like overstimulated toddlers with no supervision.

Then there’s POTS, which means my autonomic nervous system likes to freestyle. Sometimes when I stand up, my heart starts acting like I’m being chased through the woods for sport. And MCAS means my body can also randomly decide harmless things are now mortal enemies.

It’s honestly a very collaborative effort.

“But You Don’t Look Sick”

Correct. I also don’t look like someone who’s held together by kinesiology tape, electrolytes, and pure spite, yet here we are.

That’s the weird thing about chronic illness — especially invisible illness. From the outside, I probably just look like a graphic designer working from home in comfy clothes. Which is true.

What people don’t see is the constant mental math happening in the background.

How long have I been sitting?
Is my shoulder sliding out again?
Have I eaten enough salt?
Am I in pain-pain or just regular-pain?
Can I push through this flare or is this a “horizontal immediately” situation?

My body is essentially a very dramatic coworker. High maintenance. Frequently offline. Sends vague error messages.

Remote Work Changed Everything

Working remotely has genuinely made it possible for me to continue doing a job I love.

A traditional office setup would be incredibly difficult for me to maintain every day. The commute alone would sometimes use up half my available energy before I even opened InDesign.

At home, I can adapt my environment around my body instead of forcing my body to adapt to an environment that doesn’t work for it.

And yes, my workspace looks slightly unhinged.

I have a standing desk because sometimes sitting hurts.
I have a seat cushion because sometimes standing hurts.
I have a footrest because apparently my feet also have opinions now.

My laptop is elevated. My wrists are supported. My posture is monitored like I’m preparing for launch at NASA.

I own a BodyBraid, which makes me look vaguely like I’m gearing up to climb Everest, but it helps me stay aware of where my body actually is in space — information my joints often choose not to provide.

And on particularly bad pain days? I bring out the emergency accommodations:
portable monitor, bed workstation, TENS machine attached to me like I’m charging.

Nothing says “creative professional” quite like presenting campaign revisions while fully horizontal with electrical impulses firing into your spine.

I think living with chronic illness has also made me a different kind of designer — in some ways, a better one. When your body requires constant adaptation, you become very aware of how people experience things moment to moment. I think more intentionally about clarity, usability, accessibility, pacing, and cognitive overload because I live in a body that experiences all of those things very intensely every day. It’s made me incredibly solution-oriented and adaptable in my work. I’ve become skilled at finding systems that reduce friction, creating processes that are sustainable, and identifying what actually matters in a design versus what is just noise. Even day to day, managing fluctuating symptoms while balancing deadlines, feedback, meetings, and creative problem-solving has made me more thoughtful about communication, prioritization, and efficiency. Chronic illness forces you to become flexible very quickly — and oddly enough, flexibility is also one of the most valuable skills in creative work.

I Still Love My Work

That’s the thing I really want people to understand.

I am not less passionate because I’m chronically ill.

I still care deeply about my work. I still get excited about branding projects and clever campaigns and satisfying layouts. I still love collaborating with my team and solving creative problems.

I just do it while my body occasionally runs a Windows 95 operating system.

Some days are harder than others. Sometimes I can push through discomfort and continue working. Sometimes the smartest, healthiest thing I can do is take time off and rest before I completely crash.

That balance has been one of the hardest things to learn.

Because when you live with chronic illness, you become very good at enduring things. Too good, honestly.

You learn to normalize pain. To work through symptoms. To downplay what’s happening because if you stopped every single time your body hurt, you’d never do anything at all.

But I’m learning that resting before I hit total burnout isn’t weakness — it’s maintenance. Like updating software, except the software is my connective tissue and the update is lying motionless with a heated eye mask over my face.

The Nervous System Recovery Ritual

At the end of the workday, I can’t just close my laptop and immediately become a peaceful person.

My nervous system needs a formal apology first.

So I have rituals now:
the neck massaging pillow,
the heated eye mask,
meditation apps,
tiny moments of quiet to convince my body we are no longer under attack by emails and gravity.

And honestly? Those little things matter.

EDS Awareness Means Being Seen

EDS Awareness Month matters because so many people with chronic illness become experts at hiding what they’re going through.

We become “low maintenance.”
We become “good at coping.”
We become “the reliable one who’s somehow still functioning.”

Meanwhile our joints are held together with hope and compression wear.

Awareness isn’t just about diagnosis statistics or symptom lists. It’s about understanding that disabled and chronically ill people are constantly adapting in ways most people never notice.

Sometimes accessibility looks like flexibility.
Sometimes productivity looks different.
Sometimes success looks like getting through the workday and remembering to take breaks before your body starts issuing threats.

And sometimes it looks like designing a marketing campaign while wrapped in blankets with a TENS machine buzzing on your back like an angry little robot.

Which, frankly, is still pretty iconic.