Learning to Live With Multiple Sclerosis
Coming to grips with an MS diagnosis is hard. Meredith O’Brien, author of the new memoir, Uncomfortably Numb, shares the challenges she's faced since discovering she had the disease.by Julia Savacool Executive Editor
In 2014, Meredith O’Brien was diagnosed with relapse-remitting multiple sclerosis. The author, teacher, wife, and mother had spent more than two years seeking help for symptoms that were scary, strange, and unpredictable. In her new memoir, Uncomfortably Numb, O’Brien shares her emotional journey from health to illness to empowerment. We talked with her about her experience.
HealthCentral: What was it like coming to terms with an MS diagnosis?
Meredith O’Brien: It was a hard learning curve. Early on, I fought it because I was angry about the fact MS was impinging on my life and my ability to do things. I experienced a lot of fatigue, but I didn’t listen to my body. I continued loading my days with all these activities, and then paid the price of lying in bed afterward, feeling exhausted.
HC: How did others react to your diagnosis?
MO: People still don’t understand what MS means. People understand cancer, people understand how chemo affects the body. But they don’t know about MS or how it impacts you, and that makes it hard to talk about.
HC: For example?
MO: Because of MS, I have extreme heat sensitivity—if it’s hot or humid outside, I get sick. I was suddenly absent from my kids’ soccer and lacrosse games because I could only show up based on the weather. I was worried other parents would think I wasn’t supporting my kids. So finally, I started telling people: “I have MS and I’m sensitive to the heat.” And they’d be like, “Oh OK,” and change the topic. They just didn’t get it and I didn’t know what else to say.
HC: Heat sensitivity is a problem for a lot of people with MS, right?
MO: It’s my biggest struggle. I used to love going to beach all day with my family in the summer, but I can’t do it anymore. I can go at 5 p.m. If there’s a breeze. If I can get immediately into the water. I can’t go to summer barbecues anymore unless there’s shade and it’s a cool day. Everything takes planning now. I always dress with the bottom layer of short sleeves, even in the winter, just in case.
HC: What’s it like emotionally having to give up things you used to do?
MO: I don’t want to be the reason my family doesn’t go to the beach, so I encourage them to go without me. But then I am in the house alone, and it’s hard not to feel a little sorry for myself! I feel like I am being punished for something I didn’t do. But it’s my new reality and I am trying to celebrate the moments that I can. Rather than think about how I can’t join my family at 3 p.m., I think about how at 6 p.m. when the sun goes down, we can walk on the beach together. It’s a lesson in looking for the positive in everything.
HC: What have been other challenges since your diagnosis?
MO: About a year after the diagnosis, I started having trouble concentrating. I was having trouble focusing on grading my students’ papers at the university where I teach. Something I could usually breeze through. That’s my biggest fear: losing the ability to read, write, teach, and feel as though I am contributing to the world. I am a writer. What if I can’t write anymore?
HC: What can you do?
MO: I use my phone as a reminder for everything. The dog has a vet appointment, don’t forget to call so and so—it’s all in my phone. I take photos of places to cue my memory, use the notes function to help me recall conversations, and ask my husband to text me our plans so I have a record of what we’re doing.
HC: Have there been moments that have caught you off-guard?
MO: For sure. My daughter recently spent the fall semester abroad in France. My husband and I always wanted to go to Paris, and we decided to go that December. But the jet lag and fatigue that hit me when we got there made me ill to the point I thought I was having a flare-up. I was sick to my stomach, had horrible migraines, and couldn’t even get out of bed for three days. Situations where I suddenly can’t function are really scary. The unpredictable nature of MS means you don’t know when it’s going to happen.
HC: What gets you through it?
MO: In those moments I have to distract myself. I can come up with all sorts of catastrophic scenarios in my head—the worst-case outcome for whatever is going on. So I watch something stupid on Netflix. If I can read, I’ll read. Anything to keep me from staying in my head and worrying.
HC: What do you wish you’d done differently in the early stages of getting diagnosed?
MO: I should have asked more questions. When the first neurologist basically said that he was skeptical of my symptoms and suggested I just needed to do more yoga, I wish I’d gone to see someone else who gave me better advice. He made me question myself: Am I really feeling numbness? Am I losing touch with reality? There was a lot of unnecessary drama that my family experienced that could have been avoided if I asked more questions.
HC: What has been the toughest thing for you about this disease?
MO: When I was younger and had weird symptoms, they went away and I didn’t think about them. I wasn’t worried what it all meant. Now, I worry about this big question mark every time something feels different. Nobody knows their future, but people with chronic illness have a question mark that looms larger for them than other people. I hope the medication I am on will keep me OK. But I don’t know, and that’s the hardest thing. I just have to take it day by day.
Meredith O’Brien’s new book, Uncomfortably Numb, is now available on Amazon.