Realizing my healthy loved ones are dealing with survivor’s guilt

Depending on the kind of person you are, you might react differently to the idea of being responsible for someone who needs help.

Recently, I was watching a YouTube video in which the creator made a point about feeling guilty and “sorry” for people with disabilities. That hit me deeply. I suddenly wondered: Can survivor’s guilt extend to caregivers or loved ones of people living with chronic illness?

We usually associate survivor’s guilt with big disasters — war, accidents, tragedies. It’s the feeling of guilt that arises when you survive something that others didn’t. But what if that same guilt quietly exists in the people around us, especially those who love someone with a chronic disease?

When we hear about someone’s loss or pain, it’s natural to feel sorry for them. It’s empathy, not guilt. Yet I began to wonder where empathy stops and where guilt begins.

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Out of curiosity, I asked my boyfriend, “Do you ever feel guilty or bad that I’m the sick one and not you?” He hesitated for a second, then said yes.

That answer broke me.

I had never imagined that my illness could weigh on someone else in this way. It suddenly made sense why some people prefer denial when a loved one gets sick. It’s not because they don’t care. It’s because accepting that someone you love is suffering — while you get to live freely — is terrifying.

There’s also the constant fear of doing or saying the wrong thing, of unintentionally reminding the person of their condition, or of having too much fun while they can’t. It must be exhausting to always overthink how to act around someone who’s sick.

For years, I considered myself an “easy” patient. I don’t complain much, I accept help, and I try to live as normally as possible. But now I realize I might not be as easy as I thought. I might not be loud in my complaints, but I constantly talk about how people perceive my condition, about how misunderstood it is, about how they don’t see the effort behind every move I make.

I sometimes forget that while I’m consumed by my struggle, the people around me are struggling, too — in silence.

Living with myasthenia gravis often makes me feel like I’m trapped inside my own world, where everything revolves around energy levels, medication schedules, and symptom management. But for my loved ones, there’s a different kind of burden. It’s the helplessness of watching someone suffer and not being able to fix it.

Now, I finally understand why denial can feel like comfort. It’s easier to pretend everything is fine than to face the constant reminder that someone you love is in pain.

This month, which celebrates caregivers, I want to speak not just to them but also to patients like me.

To my fellow patients: Remember that empathy goes both ways. Our loved ones are not our saviors, nor are they our enemies. They are human beings learning to navigate our illness alongside us, in their own way. Try to give them space to process, just like we need time to adapt to our own condition.

And to caregivers, partners, and friends: Please don’t try to “save” us, and don’t feel sorry for us, either. We don’t need to be rescued. What we need is presence, love, and the freedom to exist without guilt on either side.

Being chronically ill doesn’t make us victims, and being healthy doesn’t make you the villain. We are simply two sides of the same reality, trying to find balance between care and independence.

Sometimes, love means accepting that you can’t fix everything. Sometimes, empathy means letting things be — without guilt, without pity. Just love.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.