A Garden View of Autoimmune Disease: Capacity, Spoons, and How to Support Someone You Care About

Invisible Doesn’t Mean Nonexistent

With more than 50 million Americans and millions more worldwide living with autoimmune disease, it’s time we raise our voices and build real hope for the people we love. (autoimmune.org)
Autoimmune disease can be invisible, unpredictable, and isolating. But you are not alone, and neither are they.

I’m writing this from both sides, personally and professionally, because autoimmune disease is part of my body and my family.
If autoimmune disease touches someone you care about, my hope is to offer language that creates understanding and relational clarity—along with a few supportive tools that won’t overtax either of you.

When autoimmune illness is part of a family system, there is an element that feels genetic—although it might not be. More than one person may be affected, and many may carry multiple diagnoses. Sure, we can have different diagnoses—someone with MS, another with type 1 diabetes, another with Hashimoto's—but we are all carrying the ability to have our bodies attack themselves. And once that feels possible, almost anything feels possible, and not in the way you want.

We also live in a culture of toxic positivity and self-help “shoulds.” It’s not just magazines anymore. It’s social media and algorithms feeding us a steady stream of what we’re supposed to be: productive, grateful, improving, “back to normal.” But chronic illness doesn’t follow hustle culture. And healing isn’t a performance.

We are a garden. We bloom toward healing and health in our own time and in our own ways. Different bodies. Different seasons. Different needs. And still, growth is possible.

One of the most disorienting parts is the unpredictability of autoimmune diseases. There are stretches where you can function, and then days when ordinary life suddenly becomes hard: your muscles may be too weak to wash your hair or go upstairs; swallowing can take real effort; mood can crater alongside hormonal shifts; and brain fog can hit so hard that the workload you once handled with ease feels out of reach.

That’s why appearances can be so misleading. Invisible doesn’t mean nonexistent. It means the struggle may be happening under the surface, in ways we can’t measure by looking. Different genders, cultures, and age groups manage their autoimmune illness differently—so if someone asks for a seat, or a little accommodation, it’s worth trusting that their body is telling a story you can’t see.

And because this reality can’t always be seen, and can change day to day, we need language that helps people understand capacity without requiring proof.

Spoons & Capacity

That’s where the chronic illness community’s “spoons” language can be so grounding. Spoon Theory (introduced by Christine Miserandino in 2003) uses “spoons” as a metaphor for units of daily energy: you start with a limited supply, and everyday tasks cost spoons. (lymphoma-action.org.uk) It’s not about turning life into math, but giving shared language to something many people with autoimmune disease already live: an energy budget that can shift without warning. (health.clevelandclinic.org)

You might have enough capacity for a “normal” day until the logistics hit—calling the pharmacy, sitting on hold with insurance, scheduling labs, answering portal messages, managing appointments, and filling out forms. None of it looks like “a lot,” but it can quietly consume your cognitive and emotional bandwidth. And once those spoons are gone, there may be nothing left for dinner plans, connection, or even basic tasks—because the day has already been spent.

Even being around loved ones or socializing can be depleting. It doesn’t matter if the connection is good; it can still cost energy: presence, sensory stamina, emotional regulation, and recovery time. Add the day-to-day requirements that don’t stop, and it’s easy to see why people can look “fine” while running on empty.

Capacity can be hard to trust, even for those of us with autoimmune diseases, because the line keeps moving. Sometimes it feels so limited, and the world still needs more, so we push. But when those with autoimmune diseases push past capacity, we can create a flare—and the cost gets bigger. A flare is the term we use when our symptoms activate, change, or amplify.

When you’re pushing past capacity, you feel it. You’re no longer in a place where ignoring exhaustion is workable. Exhaustion becomes a physical boundary guide—your body’s way of saying, “This is a limit.”

And even if we do everything “right”—eat the way our bodies need, hydrate, get enough protein, exercise in ways we are able, practice self-care—we can still get flares. It can shake the trust we have in our bodies until we learn to live in this new body. Autoimmune life can be ever-shifting, moving the goalpost of “new normal”—and that alone can feed anxiety or depression.

So we don’t need to run or jump ahead. We can follow the path of our spoons—listening for what’s true today—and let that guide what comes next.

Showing Up for Someone with Autoimmune Disease

Once you have language for capacity (spoons, an energy budget, fluctuating symptoms), support becomes much simpler. If we cannot figure out our bodies, we cannot expect anyone else to. What we can hope for is patience, grace, and understanding.

As a Marriage and Family Therapist who works with relationships impacted by chronic illness, I often tell loved ones: presence is one of the best gifts you can give. A check-in matters. “How are you doing?” can be a real lifeline—especially when illness is isolating and unpredictable. Follow their cues. You don’t have to be a mind reader, and you don’t have to be afraid of getting it wrong.

What tends to land badly (even when it’s well-intended) is minimizing, fixing, advising, or interrogating. A more supportive move is simple curiosity plus consent: “What kind of support would feel good right now?”

Sometimes it helps to have a script ready. Below, I shared a few we may use in sessions, or that have been helpful for me personally. Use what fits the relationship and the moment.

Quick support phrases:

• “Thinking of you. No need to respond.” (a quick text)

• “Would it be more helpful if I listened, or do you want advice?”

• “How are you today? Is there anything I can take off your plate?”

Work-appropriate support that protects dignity and honors competence:

• “No need to explain. What would help you today?”

• “Want me to take one piece of this task so you can focus on the priority?”

• “We can revise the plan or deadlines. What’s realistic from your side?”

Three common support misfires (and gentle upgrades)

1. “Let me know if you need anything.”
   This one isn’t wrong. For many people, it genuinely helps to hear: I’m here and available.
   Optional upgrade (only if you want to make it easier): offer one specific option with no pressure: “I’m around. I can drop something off or check in tomorrow—no need to decide right now.”

2. “But you seemed fine yesterday.” / “You don’t look sick.”
   This is the one that tends to sting—because it turns invisible illness into something that needs to be proven. Instead, trusting their truth is enough. You can simply take it in: “Got it.” “Thanks for telling me.” “I hear you.”

3. “Have you tried…?”
   Not always offensive—but it can be exhausting when someone is already managing a lot.
   Gentle upgrade: ask permission: “Do you want ideas, or do you want me to just listen and stay close?”

One more thing that matters: this isn’t something you have to do every day—unless you know the person genuinely appreciates daily messages—but, as I mentioned above, socializing, even with people we care about, can be a spoon. Often, it matters most when you know a flare has started, or when they’re navigating a rough stretch.

People with autoimmune disease usually don’t want to be waited on hand and foot. What we want is to be understood—especially when we’re struggling. Support that honors autonomy and reality is often the most healing kind.

Support Looks Different for Each Flower

Autoimmune disease can feel like a garden at times—like weeds choking us out, draining our capacity, and making everything harder to access. And still, with sufficient support and resourcing, we can find what helps us heal and steady. As you think about supporting your friend, remember: support looks different for each flower. Capacity is shifting, and we learn to adapt.

Like a lotus that grows in murky and muddy water, we can bloom in our own time—through challenges, not around them. And I want you to have permission to recognize that life can be hard and still good—because pain doesn’t erase beauty.

You don’t have to fix it. You can sit next to your loved one as they process. That is generous. That is loving. Being an ear is enough—especially when it doesn’t demand energy they don’t have.

Sometimes resilience is practical: it’s hard to hold a cup with tremors, so we find a cup designed for us, a straw, or use two hands to get through the day.

Bottom line: You don’t have to understand every symptom to be supportive. Believe what you can’t see, plan around capacity, and offer specific kinds of help without requiring proof.

If you want to keep learning about relationships and chronic illness, follow my newsletter and socials.

Links to Sources:

Autoimmune.org (About autoimmunity — “50 million Americans”):
https://autoimmune.org/resource-center/about-autoimmunity/

“The Spoon Theory” (Christine Miserandino) PDF:
https://lymphoma-action.org.uk/sites/default/files/media/documents/2020-05/Spoon%20theory%20by%20Christine%20Miserandino.pdf

Cleveland Clinic — Spoon Theory explainer:
https://health.clevelandclinic.org/spoon-theory-chronic-illness