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9 Things I Wish Everyone Knew About MS Fatigue

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Multiple sclerosis is exhausting. Fatigue was one of my most severe symptoms during the relapse that earned my diagnosis. It’s still my biggest and most debilitating MS-related issue. It was a big part of why I left my job. It’s affected friendships. I think about and confront my fatigue frequently.

I was diagnosed in my 20s, like many people with MS. Being “too tired” in your 20s isn’t really a thing. I remember going to bars while the entire left half of my body was numb and buzzing, barely having the energy to talk. I remember feeling guilty when I finally started cancelling on people, before I had my MRI and didn’t know what was going on with me. I still took a multi-day road trip and attended a wedding, though. The worst thing I thought I could be was flaky, disinterested and/or lazy. We are culturally afraid of laziness, and even three years post-diagnosis it’s difficult for me to convince myself I’m not sometimes exaggerating my fatigue.

But I’m not lazy or exaggerating, and neither are you or your friends or family with MS. Here’s what I wish everyone understood about dealing with MS fatigue in your 20s/30s:

1. It doesn’t always seem to have an obvious connection to anything, and the random unpredictability is often the scariest part. The work my body is doing to overcome central nervous system damage and nerve demyelination just takes up a lot of energy.

2. The unpredictability makes me a lot more cautious and conservative in what I will try. It takes a lot of slow risk taking and practice to see where the line is, and it’s constantly changing. A lot of that work is undone with each relapse and new symptoms.

3. While lots of sleep doesn’t reliably improve fatigue, a lack of sleep almost always worsens it. Even one night of less than eight hours feels like I’ve been awake for three days. I’ve driven the wrong way down one-way streets, forgotten names of people I see every day and had vision so blurry I couldn’t recognize my students or the number of the bus I needed to take. I have to be really strict about my bedtime in a way that’s foreign to my friends who haven’t taken bedtime seriously in literal decades.

4. Sometimes mental activity is a lot more exhausting than physical activity. Preparing and going on a job interview will leave me much more worn out by the evening than a day walking around the city. Going to a party and meeting new people is already pretty tiring for an introvert, but throw in MS fatigue? I’m sorry, but I’m probably going to be leaving your party early.

5. Pushing through the fatigue is never a good idea. It’s hard to ignore the messages of never giving up, even when you feel too tired. It’s even harder to say no before you’ve become too tired, but you know it’s coming. FOMO is real, but fatigue (and the fatigue hangover the next day) is worse. I’m still re-learning this lesson too often.

6. Work/life balance is almost impossible. When I worked full-time, my weekdays consisted of waking up, going to work and coming home to lie down and/or sleep. There are no after-work drinks, evening classes or even time to make dinner. It’s often expected that the beginning of your career will be less balanced, but it’s difficult for coworkers and supervisors without MS to understand how severe the imbalance is.

7. Not being able to work full-time, or working from home, doesn’t mean I suddenly have tons of free time. A lot of my day is taken up by budgeting my energy and basic daily tasks. It’s doing the stuff I couldn’t do when I worked and fitting it in around naps and potential very low energy days. It’s frustrating to hear “I’m sure you can fit it in” when I’ve already tried to carefully balance my week’s schedule.

8. There’s mourning involved in how drastically my life has changed. It’s hard to accept I can’t do the same things I used to and what my friends are still doing. Your social life changes and your circle becomes smaller.

9. There’s also acceptance and understanding, and I finally learned how to be a self-advocate. I learned to say no because my body forced me to.

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Thinkstock photo via MangoStar_Studio.

Originally published: August 17, 2017
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