My husband has MS, but as a caregiver, this story is mine, too
The person carrying the weight is also a whole human being with a worthy story
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Recently, after I shared some of the harder parts of caring for my husband, Rhead, a stranger left a comment on a recent column implying that I was simply monetizing his multiple sclerosis (MS) — that by telling my story publicly, I was profiting off his illness. I have thought about that comment more than I would like to admit.
At first it stung, and then it made me curious. Why is it that when someone is diagnosed with a disease, we agree the story belongs to them, but when a caregiver speaks, we are accused of taking something that was never ours? Rhead’s diagnosis is his to carry, yet it reshaped my life, too. It rearranged my days, my marriage, my sense of who I am, and even the childhood of our kids. Why does that version of the story get treated as though it doesn’t count?
I understand the instinct behind the criticism. When you live beside a chronic, progressive illness, there is a quiet assumption that the patient is the only one allowed to hurt, and that everyone else should stay useful and quiet. I have written before about caregiver burnout and the emotional roller coaster of this life precisely because that silence nearly swallowed me. Naming my experience was not a betrayal of my husband. It was how I kept from disappearing.
Picking up the pieces
There is also a difference between telling a story and telling on someone. I am careful never to expose Rhead’s private medical details or to turn our marriage into a spectacle. What I share is my own interior world — the fear, the grief, the unexpected joy, and the days I wondered whether I could keep going. Those feelings are mine, and they belong to me as surely as his diagnosis belongs to him.
The caregiver is often the person who picks up the pieces, and not neat puzzle pieces that fit back together, but the scattered fragments of a life — and frequently several lives at once. We set down the things we once loved so that everyone around us can keep standing. We learn medications, appointment schedules, and how to read a bad day before it arrives. And still, when we finally speak, we are told the story was never ours to tell.
I do not share to profit from anyone’s suffering. I share because I once needed to read words like mine and could not find them. When I first went looking, I found mostly clinical pages and cheerful advice that did not match the weight I was carrying. Reading another caregiver’s honest account, like the one I found through a support group, did more for me than any pep talk ever could. It told me I was not broken or ungrateful. I was simply a person under an enormous load, doing my best.
People often ask, kindly, how Rhead is doing. I love that they ask, and most of them genuinely do not know what else to say, especially if they have never lived anything like this. But every so often, I wish someone would turn and ask how the caregiver is doing, too. Not because his health matters less — it matters immensely — but because the person carrying the weight is also a whole human being with a story worth hearing.
So, no, I will not stop telling mine. I will keep protecting Rhead’s privacy and my own integrity, and I will keep writing honestly about what this life asks of the people who love someone with MS. If my words help even one exhausted caregiver feel less alone, or point them toward resources that steadied me, then telling my story was never about taking anything. It was about giving something back.
If you are a caregiver who has felt this same pressure to stay quiet, I hope you will hear me clearly: Your story matters, and it is yours to tell.
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.
Rima
Thank you so very much for sharing your thoughts and experiences. My husband also has MS and I relate so much to what you share, as a wife, as a mother and as professional career person, my life was never the same after his diagnosis and it keeps evolving with his evolving needs and our joint health decline.
Your words are gold. Thanks for sharing 🩷
Lucia Fabijan
Dear Lindsay, I found your column and started to read it several months ago . I wish I had been able to read it a very long time ago. Despite loving family and friends , it would have helped me really know that I am not alone . Today’s column brought tears to my eyes as it is spot on about the painful & yet invisible suffering of caregivers . My husband has had MS x 50 years . We have been very fortunate in that his progression really requires my caregiving now ( we are in our 70s) but we have both lived the impact and losses of his MS all these years in our individual ways. The pain of the loving spouse is very real with all the other “good bad and ugly “emotions we experience . Thank you for your courage in writing the truth . Lucia from Canada
Russell Wiener
My wife was diagnosed with multiple sclerosis 32 years ago and I started being a caregiver shortly after. The range and impact of her symptoms resulting from MS gradually expanded through the years making greater and greater impacts on both of our lives. Martha became disabled and I have had to expand my roles as the well spouse in regard to her care, my children"s care, and household chores" which in turn affected her ability to work outside the home as well as mine. I have not "monetized" my wife's experience with MS but have voluntarily organized support groups, given lectures on caregiving and on preventing medical harm, and have no issue with accepting pay for work in this area of my life. Fortunately I am now retired and am not looking for any type of employment. The person who made the comment on your monetizing your husband's illness clearly has no understanding or appreciation of what it takes to be a good caregiver.
Julie Kendall
I would like to say Thank you for your article on Caregiver Burnout. My husband also have MS . I take care of him also 2 other people, also working. I read your article & I showed him the article. Now he understands I was going through. We decided I don't work anymore.
Marybeth Cully
I'm sorry someone was so thoughtless... I am a long termer and our life is significantly impacted by MS. I carry the illness, my husband carries everything else and I assure you that's a heavier load than mine. I always tell people that we have MS, because that’s the truth. I blessed to have this amazing human that walks this journey with me. I'm sure your husband feels the same way. Keep sharing your story it needs to be heard!
Barb Gubana
Your point of view is valid and accurate. I am an MS patient who constantly worries about my husband, as a caregiver, and always asks how he feels. He is too kind to say anything other than that he’s fine. But it is a concern I always have.
Jean Lee
So I researched this a bit after reading and have to disagree with other comments, and the comment you mention as the subject of your piece isn't exactly as you describe it: A quick look across various social media shows that you are also "monetizing" his disease, to use that term (had to look it up). Whether or not that's an ethical issue is totally debatable (I can see either side), but you are in fact doing that. The comment was short and in the form of a question, so your contention that it was meant to "silence" you seems disingenuous and unfair. I've enjoyed some of your other perspectives shared here, but this particular piece seems disingenuous to me, and frankly designed to quickly create more "content". Real reflection would take a serious look at the moral aspects of being an "influencer" in a situation such as this, receiving compensation therefrom, and whether everything needs to be converted into money. I'm in a similar situation with this disease, and I feel it's more complicated than your quick conclusion.