What YOU Wish People Knew About MS-Fatigue

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MS-related fatigue is not “regular” fatigue, but it’s hard to help people who don’t have MS understand what this type of fatigue is really like. We recently shared an article by one of our community experts outlining some things others may not know about having MS-related fatigue.  So many of our community members shared their feelings with us, so we wanted to capture some of their thoughts on what they wish others understood. Here’s what they had to say.

Wishing Others Would Simply Understand

“I know I work, and by the time I get off, my body doesn’t want to move, much less think. I can be somewhere and be just as lost because of the fatigue. I feel your pain that if you don’t have MS you don’t understand”

“Thank you so many times over. I started crying reading this. I have tried so many times to explain the difference between being tired and fatigue, I feel to no avail. My fiancé tries to understand but gets so frustrated with me when all I want to do is sleep”

“I have had this issue since my diagnosis, and like you said, when I say I am tired, people tend to go straight to their own tiredness and talk straight over me if I want to explain”

Cognitive Fog Troubles

“I am one of those who still work, but the stress of the job causes brain fog and cognitive issues and mental exhaustion. It’s not that I can’t do my job, it just takes me longer”

“More and more it’s not just physical fatigue, but a mental fatigue as well. My once very capable brain slows down to a point that the simplest math task or organization plan has to be figured over and over again until I’m annoyed and frustrated with myself”

“Spot on! I often find my brain sending me messages to give up. I can compare it to the feeling of sprinting until you can’t sprint any longer. Your brain tells you to stop, give up. The same is true for me with MS. My brain is telling me to give up”

Frustrations, Life Changes, and Never Giving Up Hope

“I always get the, ‘you’re just getting older.’ Hello!! I’m 34, how’s that old? Isn’t that like the prime of your life? People run marathons well into their 50’s!”

“On day after working, my then 10-year old son asked me to play a board game, I replied, ‘I’m too tired.’ He shot back, ‘mom you’re always too tired.’ That broke my heart”

“I can feel great, go out to dinner, order my food, and by the time it gets served, I’m so fatigued I don’t feel like picking up my fork to eat”

“You have the fatigue, but you still try to do things. It takes twice as long, since you drop things or are off balance. This leads to frustration, then anxiety, and full-blown stress. And your mind keeps playing the tune, ‘I wish I could feel good for just one single day.’ And to top it all off, it’s a beautiful day and you just want to enjoy it. The day in the life of a person living with MS”

“Remember that MS is not what defines us. We can still have a good life if we remain positive and keep trying. We CAN NOT let it get us down. We are all better than that. And for me, I try to remember that I am not in this alone, and sometimes that helps me get through the day… In between naps!”

Thanks to our community for your awesome responses. Keep sharing with us, and with each other, how you handle MS-related fatigue, and what you wish others knew about your struggles!

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Getting Graphic When You Have Multiple Sclerosis

Young couple looking distressed or angry

Sometimes when you try to communicate with others, your point may be misconstrued, or something may be lost in translation, or you feel that no matter what you are saying the other person just doesn’t “get it.”

In my role here at MSAA, I have heard from many people who are frustrated or disappointed that someone close to them, be it a family member, a friend, or even a close co-worker (someone who they know cares about them), just doesn’t “get” MS. They may not understand the daily or even hourly ups and downs of MS, or the invisible or hidden symptoms you are trying your utmost to manage, or maybe it’s just an expectation that everything should be the same as before your diagnosis, when for you it feels like the whole world has shifted.

No one wants to feel that our friends, family, and supporters are clueless, unhelpful, or uncaring…after all you KNOW they care about you, and that’s why you include them and want them to be a part of your life, and that’s why it feels so wrong when you can’t express your needs or they don’t seem to “get” what it is you are dealing with, or struggling with, or needing.

When words aren’t enough, get graphic…and not in the style of an R-rated movie, but instead embracing that sometimes a photograph, picture, or artwork can help support what you are saying. Even a visualization can sometimes be helpful, for example, “Sarah, I know that you are trying to help, but when you say that it makes me feel like you’re asking me to put a bag with a smiley face on my head…can you picture that? ” If you picture it, a person with a smiley face bag is being asked to hide their true emotions, or even if they express those emotions they cannot be seen by others. Sarah may picture that bag the next time she wants you to turn your frown upside down and be more empathetic to your needs.

So, the next time you feel like words are just not enough: snap a photo of how you are feeling, draw a picture of your thoughts, or give a visual depiction of your concerns. You may find that a visual display is sometimes the bridge that is needed to help your support person really “get it.”

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