The Emotional Crests and Troughs of Living with MS

By Regina Beach

I have so many feelings around living with Multiple Sclerosis (MS). There’s the grief of the life I thought I’d live that will likely never materialize. There’s the sadness of feeling helpless and incompetent at basic things, taking forever to do tasks like cooking, cleaning or getting ready for the day. I need support for the errands and minutiae of daily life that I used to take for granted. 

I also feel a lot of shame: over not making it to the bathroom in time again . . . and again. There’s the shame, (or is it regret?) of not getting my symptoms checked out when they first emerged. Would I have been able to stem the tide of profound disability with more hasty intervention? There’s also the guilt I feel for relying on my husband to take care of me. He does the lion’s share, earns the lion’s share, and takes care of the house, carefully planning with me in mind. We were barely married when I started having symptoms. I regret he only knew me for a few years in my old body that could hike and bike and run and dance. 

I have never been so aware and yet so unaware. I stepped on a shoe in the living room yesterday when I came home from physiotherapy and fell on the floor, totally unaware of my surroundings, where I was standing. I do that with my own legs; sometimes I forget they're crossed or don’t know what I’m stepping on. 

I’m also hyper aware: of the pins and needles in my feet, of the way I walk and the stares that accompany me if I’m in public on my own. I’m better able to steel myself when I’m with family or friends. I’m aware of my bladder, worry about my bowels, but awareness doesn’t always equate to control. 

I feel frustrated not knowing if I’ll have a good day or a bad one when I get up. Will I be able to walk well or hardly at all? The inconsistency is maddening and sends my type A plan-ahead brain into a tailspin of myriad eventualities to plan for: What if I feel like this? What If I need that? What if this happens? I can’t be spontaneous anymore. 

I feel anxious about the future. I know there are people who stabilize, even improve their symptoms, shrink their lesions, live with more or less benign MS, but will I be one of them? My symptoms have been with me a long time and with every passing year I feel like recovery is just that much more out of reach. Will I deteriorate? Will I need constant care? Will my cognition fail me? My aphasia worries me the most. Forgetting names of people, of companies, of household items. I love words; they have been my constant companion. Who will I be if they run out one by one? 

I also feel compassion in a way I never have before, for the elderly, those with visible and invisible disabilities, and those whose brains are wired differently. I used to be strict and unrelenting. I was in the camp of “do more, try harder, work more and surely anything will be surmountable.” I’ve softened, admitting some mountains just can’t be climbed. 

I’m grateful for the good days, the community I’m developing, and the incredibly diverse group of people MS has brought into my life. I have a global community united by technology and membership in a club no one wanted to belong to. I’ve met people all over the globe who have introduced me to a healthier lifestyle. Even if I am so sick in some ways, I’m eating better than I ever have, managing my stress better than I ever have, and thinking of myself first in ways I never have before.


I’m in a better headspace than I was a year ago. It’s been four years since I felt the first tingles in my feet. I was a real mess emotionally for a long time. Anxiety and depression are now recognized as MS symptoms and not just secondary conditions that often coexist with the disease. I used to feel a lot of bitterness and resentment toward everyone with MS who can still walk, who can hold their bladder, who has seemingly milder cases than I do, but who’s to say really what’s actually worse? 

A year ago I would have struggled to find the silver lining. My partner has lived up to his promise that we’ll still see the world, just in a different way and at a different pace. He’s promised to stick with me, even when – and perhaps especially when – I’m difficult to love. I’m sure he has a lot of emotions around MS, too. Helplessness, anger, feelings of unfairness, discomfort, but he has never been upset with me, never blamed me, never accused me of faking or exaggerating a symptom. I know others with partners who are less generous in spirit around this ever in-flux disease.

I know that my feelings will change. There are people who say getting sick was the best thing that happened to them, that they got clear on their priorities, changed their jobs, dove into their bucket list, are healthier and happier than they’ve ever been. I’m not one of them. I’m not there yet and I don’t know if I’ll ever get there. But I don’t think that they’re the toxically positive Pollyannas I use to think of them as. Now I think they truly believe what they say; maybe they have found the needle in the haystack, the diamond in the rough, made their own pitcher of lemonade. Maybe someday I will, too.

About the Author

Regina is a disabled poet and essayist. Originally from the American midwest, she now calls the Welsh Valleys home. She is the inaugural poet in residence at the Risca Industrial History Museum for 2024. Themes in her work include the arts, culture, travel, wellness and the unique people and places in those spheres. Her writing has appeared in Global Poemic, Boldly Mental, The Rail, Haiku by You, Five Minutes, Visual Verse, The Horror Tree, and Disoriented among others. She is the founder of the literary magazine Lesions | Art + Words, which features the work of people living with chronic health conditions. Regina hosts Writers’ Hour and a monthly virtual open mic for the London Writers’ Salon and is the editor of the Salon’s Writing in Community anthology. She facilitates monthly writing workshops for the MS-UK charity and is the producer of the Living Well with MS podcast. Regina has written about living with disability for Overcoming MS, the MS Society, MS-UK, the Unwritten and Wales Online. Read more of Regina’s writing at reginagbeach.com or subscribe to her newsletter at reginagbeach.substack.com.