When Friends Need your Help: Navigating How Much of Yourself You Can Give
One of the quieter lessons of living with Inclusion Body Myositis—or any long-haul disease—is that life doesn’t pause just because your muscles are weakening. Friends still get sick. Parents age. Partners or children struggle. Crises pop up like uninvited guests who didn’t even bother to bring wine.
And sometimes, the people you love need you.
This can feel complicated when you’re already running a daily deficit of energy, strength, and patience. When simply getting dressed feels like an accomplishment worthy of applause, being someone else’s support system can feel… overwhelming. Or guilt-inducing. Or both.
Because here’s the thing no one really prepares you for: you can be deeply compassionate and physically limited at the same time.
The Myth That Help Must Look a Certain Way
Before IBM, helping someone meant doing. Showing up. Carrying things. Driving across town. Sitting for hours in uncomfortable chairs. Saying yes without checking the calendar or your body.
After IBM, the definition of help quietly but radically changes. It might look like:
Listening without fixing
Sending a text or calling instead of making a visit
Researching resources when your body can’t physically show up
Saying “I care about you” without saying “I’ll handle everything”
At first, this can feel like you’re offering a discount version of yourself. But you’re not. You’re offering the version that’s sustainable. And sustainability matters—especially when your own condition is progressive and unpredictable.
The Emotional Tug-of-War
There’s often an internal argument that goes something like this:
They’re really struggling. I should do more.
But I’m exhausted.
But they need me.
But if I overdo it, I’ll pay for it tomorrow… or all week.
Sound familiar?
People with rare diseases often live with a heightened sense of empathy because we know what it feels like to be dismissed, misunderstood, or alone. That empathy can turn into over-giving if we’re not careful, especially when helping others feels like a way to stay “useful” in a body that no longer cooperates.
But here’s the hard truth I’ve learned (and relearned): You do not owe anyone the version of yourself that existed before your diagnosis.
Boundaries Are Not a Failure of Love
This is where boundaries come in, those awkward, uncomfortable, absolutely necessary guardrails.
Boundaries don’t mean you love people less. They mean you’re acknowledging reality.
They sound like:
“I want to support you, but I can’t physically do that.”
“I don’t have the stamina for a long visit, but I can check in regularly.”
“I need to pace myself so I don’t flare or fall.”
And yes, sometimes people will be disappointed. That’s painful. But disappointment is not the same as abandonment. The people who truly care about you will learn how to accept help in the shape you’re able to give it.
Helping Without Losing Yourself
One of the biggest risks—especially for those of us living with chronic illness—is disappearing into other people’s needs because it feels easier than confronting our own limitations. Helping should not come at the cost of your health, safety, or dignity.
A few gentle guideposts I’ve learned:
If helping today means you can’t function tomorrow, it’s too much.
If you feel resentment building, it’s time to reassess.
If you’re afraid to say no because you don’t want to be seen as “difficult,” pause. That fear deserves attention.
You are already navigating a disease that asks more of you than most people will ever understand. You are allowed to conserve what little energy you have.
Letting Others Help You, Too
This part is harder.
When you’re used to seeing yourself as the strong one—or when illness has already taken so much—it can feel unfair to need help while also setting limits on helping others. But relationships aren’t a ledger. They’re not balanced by equal effort at every moment. They shift over time. Sometimes you’re the one leaning. Sometimes you’re the one offering a steady hand. Sometimes you’re just sitting quietly beside each other, both doing the best you can. And that counts.
A Different Kind of Presence
Living with IBM has taught me that presence doesn’t have to be loud or physical to be meaningful. Sometimes the greatest gift you can give someone is honesty: “I care. I see you. I’m here in the way I can be.”
That’s not giving up. That’s adapting. And adaptation, as anyone living with a degenerative disease knows, is not weakness—it’s survival.
So if your friends need your help, give what you can. But don’t give away the pieces of yourself you need just to get through tomorrow.
You matter, too.
“All we have to decide is what to do with the time that is given us.”
— J. R. R. Tolkien
We have a bookshop store HERE where you can find books Linda has read, or that look helpful for folks dealing with chronic diseases of various kinds.
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
