MS caregiver burnout broke me before I knew its name

For years after my husband, Rhead, was diagnosed with progressive multiple sclerosis in 2019, I was working two full-time jobs, raising our six children, and caregiving for him around the clock. I kept telling myself I was managing, because the alternative was unthinkable. I had to be managing. Someone had to be.

Then, one day at my parents’ house, I wasn’t managing anymore.

I remember feeling my body leave itself. That is the only way I know how to describe it. One second, I was standing in the room with them, and the next, I was somewhere above the scene, watching myself scream at the top of my lungs: “I don’t know if I can do this anymore!”

The sound came out of me with a force I did not recognize as my own. I saw the expression on my parents’ faces — pure, undisguised worry — and even in the middle of whatever was happening, some small part of me registered how badly I had just scared them.

I did not have a word for what that moment was. I thought I was breaking. I thought I was losing my mind. What I did not know, and would not know for a long time, was that what I was experiencing had a name.

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Eventually, Rhead’s care became more than I could continue to provide at home, and he moved into an assisted living facility. Some time after the transition, during a conversation with the director there, he used a phrase with me that I had never heard spoken in that way before: caregiver burnout. He said it the way a doctor gives a diagnosis: matter-of-factly, as though it were obvious. It stopped me mid-sentence.

I had heard the word “burnout” before, but not in that context and not as something clinical. Not as something that can happen to a person who loves someone with a chronic illness and simply keeps going until her body and mind refuse.

Caregiver burnout is a recognized state of physical, emotional, and mental exhaustion in people providing long-term care for someone else. It is not a character flaw, nor is it weakness. It is a real, documented consequence of giving everything you have for too long, with too little support.

Hearing it named in that office changed something in me. The out-of-body moment at my parents’ house suddenly had context. The months of feeling like I was going crazy, the physical exhaustion that no amount of sleep could fix, the way I sometimes couldn’t remember basic things in the middle of the day — those were not signs that I was failing as a wife or a mother. They were signs that I had been running on empty for so long that my system had begun to shut itself down in self-defense.

What I wish someone had told me earlier is this: Caregiver burnout is a medical concern, and it does not announce itself politely. It arrives first as fatigue you can explain away, then as irritability you do not like in yourself, and eventually as a breakdown you never saw coming. By the time you are inside of it, you often cannot see yourself clearly enough to ask for help.

In the online caregiver support group I run, which now has more than 3,000 members, I watch this pattern play out constantly. People describe symptoms identical to what I experienced in the months leading up to my parents’ living room, and they have no idea those symptoms have a name. One of the most important things I can do now, years after my own breaking point, is to say the words out loud to other caregivers before they end up in a room with the people who love them, screaming in a voice they barely recognize.

If you are somewhere in this math right now — caring for someone you love, holding too many roles at once, feeling like the wheels are coming off in a way you cannot explain — please hear this. Caregiver burnout is real, and it is serious. Recognizing it in yourself early is not a weakness or a failure. It is one of the most important things you will ever do for the person you love and for yourself.

I did not know any of this when I screamed at my parents that afternoon. I know it now. My only real regret is that no one put that word in my hands before I got there.

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.