The problem with telling caregivers to remember ‘who the real victim is’

There is a belief I run into again and again as a caregiver, and it usually arrives dressed as sympathy. It goes something like this: Don’t lose sight of who the real victim is. The person with the disease didn’t ask for it, their life is the one that was taken, and the caregiver, by comparison, still has a future ahead of them.

I understand why people think this way. But after more than a decade of caring for my husband, I can tell you that this perspective misunderstands almost everything about who we actually are.

My husband, Rhead, has progressive multiple sclerosis (MS), a disease that damages the central nervous system. In his case, it mostly affects his cognition and mood. He did not choose it, and I have never once believed that he did. That is exactly the point people miss. I know he is sick. I understood it the moment I stopped seeing laziness and started seeing illness. Everything shifted for me the day I realized that what I was living with was not a choice he was making but a disease from which he was suffering.

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Here is the part that the “remember who the real victim is” argument cannot account for: Because I could see that he was suffering, I stayed.

A victim, in the way people tend to mean the word, is someone helpless, someone to whom life simply happened without a say in it. That is not a caregiver. I married a man I loved, but even though MS took the marriage I thought I’d have, it didn’t take away my ability to choose. I could’ve walked away. I could’ve rebuilt my life, found new footing, and let someone else carry this. Many caregivers could. But many of us don’t. We look at a person who has become unable to help themselves, and we step in anyway, knowing full well what it will cost us. It is a daily choice we make.

Make no mistake, it does cost us. MS wrecked my world, too. It rearranged my days, my marriage, and my sense of who I was. Some years, I worked myself nearly to the point of collapse trying to hold everything together. So I won’t pretend that caregivers walk away unharmed, because we don’t. But being wounded by something is not the same as being its victim in that passive, helpless sense. I was not simply swept along. I chose this, over and over, with my eyes wide open, and there is a world of difference between a person who has no say and a person who gives everything knowing exactly what it will take from them.

That is what caregiving actually is. It’s not a victim mentality; it’s a decision, made quietly and repeatedly, to set our own needs down and pick up someone else’s. We become the steady place, and sometimes the emotional punching bag, precisely because we can see that the person we love doesn’t mean to be the way the illness has made them. We do it anyway. And yes, somewhere in all of that giving, many of us lose pieces of ourselves.

So when someone tells me not to forget who the real victim is, I want to gently offer a different way to see it. There is no victim here in the way you are imagining. There is a person who got sick and did not deserve it, and there is another person who saw that suffering and ran toward it instead of away. Both of those things are true at once, and neither one cancels out the other.

Caregivers are not the ones who lost. We are the ones who stayed. And if you have ever wondered whether that is a kind of strength, I promise you that it is the quiet, unglamorous kind that no one claps for, offered again every single morning to someone who may never be able to thank you for it.

Note: Multiple Sclerosis News Today 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 Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.