“I think we all have empathy. We may not have enough courage to display it.” ~ Maya Angelou
When I talk to people who don’t have multiple sclerosis, they always try to find some kind of way to relate to me. Which is good. But usually, as the conversation evolves, I can see the confusion on their faces when I try to explain my situation.
Most don’t understand my aches. And probably never will. They don’t identify with the numbing and tingling. And to them, wall walking is some new teenage slang word.
But then I mention I’m always tired and their faces light up. It’s because everyone can relate to tiredness. So they attempt to make a deeper connection through stories of being exhausted from playing with their kids or having to cook dinner after work.
I try to hide my frustration while they provide solutions like a 10-minute nap, energy drinks or just powering through that worn-out feeling.
I point out that MS fatigue is not like that. It’s so different. But, they don’t understand how my “tired” is not the same as their “tired”. It’s because most people have never been incapacitated by extreme fatigue. For the average person, it’s a fleeting moment in the day. But for me, it’s a daylong ordeal. I wake up tired. I function all day tired. And I go to sleep tired.
I even mention the medications I use to give me energy. It’s the only thing that keeps me going. And even though, I’m still weary after taking those meds, it makes the fatigue more bearable. Because when I don’t take anything, I hit rock bottom. And once that happens there’s no coming back. I’m usually done for the day. Those are the times I just sit in it. I sit in the fatigue as it strikes like a plague swarming my entire body. Bashing me like a cannon ball to the stomach. Nearly knocking all the life right out of me.
For some reason, even after I have enlightened them, most people still don’t truly comprehend MS fatigue. But I appreciate those who try to understand. It lets me know that empathy is alive and well.
Fatigue is a huge problem for us, isn’t it? The best description of MS fatigue that I’ve found was on the blog, Overcoming MS. They said it’s lie having jet lag, the flu, and a hangover all at once. I couldn’t agree more!
I also have fatigue and it drives me insane! I am always late for work cause I’m dragging myself to get ready and takes me an hour and a half to get there. I sometimes fall asleep on my chair and it takes all of my might to get up. I have pep pills but I don’t like to take them because they mess with my stomach which is not a good thing when you’re rushing to get out of the house in the morning. My doctor told me to hit the gym which I did but lately the gym is NOT where I want to be. I don’t want people to think I’m being lazy but this fatigue is kicking my butt! I try to remain positive and say that this will eventually pass but for now, I will deal with MY new normal.
Ah! The multi-tasking invisible symptom called “Fatigue” it attaches itself to you energy base, focus, and memory. To the general masses it looks like laziness.
Charles has RA and I always think. He’s not pushing through that he’s being lazy. Then I read this and realize that he has a chronic illness… needed this! It was very humbling!
Yes, I totally understand! I’ve had MS for twenty years but it’s gotten worse over the last 10. I am using a cane more and more and I can’t explain my level of fatigue to my husband. I call it debilitating fatigue and I can barely finish grocery shopping. My husband is wonderful, but only someone with our disease or something similar understands.
Thank you for sharing! My best friend has been diagnosed with MS and I am trying to learn more about what she goes through.
Thank you for the sharing everyone. I can certainly relate to the wave of fatigue that even effects my ability to speak and think clearly. For years I told friends, family, doctors, ER personnel what I was going through and once the electrolyte tests and cardiac tests and every other chemical measurement came back as in the normal range there was always the same end result. They all try not to say too harshly that I must be suffering from depression. I realize it’s an easy leap to make given the way an undiagnosed MS episode must soind like when your trying your best to explain it to people witj no point of reference, but maybe more awarness of MS is what’s needed? Do I fall in line with those who simply reply “fine” or not having a great day today but I’m not calling 911 today..
Well said and like the others, lots of agreement and head nodding on my end.
Nicely writhen wish I felt the same
Hi Nicole. I’ve had MS officially for 2 years, but in retrospect, probably for 14-16 years. I often describe MS fatigue in terms that many people can understand – not all, but many. I tell them it feels most like a combination of a bad case of mono at the tail end of a course of radiation from cancer. Because they have either had that case of mono, or known someone with cancer – maybe even have had it themselves, often people can understand these comparisons when other, more wordy descriptions fail.
Hi Nicole-there’s not much to say that hasn’t already been said but I just want to add my AMEN to kicking this never ending fatigue!!
It is frustrating when healthy people equate fatigue with tiredness, but I can’t blame them for their ignorance. I didn’t understand fatigue until I experienced it first-hand, and I think that’s true for everyone. You can describe it in minute detail, but words can never truly convey just how debilitating fatigue can be, how everyday tasks like showering and dressing can become daunting and leave you needing to rest up for a couple of hours afterwards.
The best we can do is be patient and appreciate that friends and family are trying to understand. It’s not their fault that they don’t, and it’s a good thing too. After all, we wouldn’t wish it on them, would we?
Hi Nicole. Very well written article, as usual. It clearly describes how many/most of us feel on a daily basis. Fatigue has a mind of its own and can truly control our lifestyle!
Initially, i would get so frustrated with friends and family who just didn’t get it. Then, I treid to look at it from their perspective. I asked myself, exactly what did I expect from them. They have empathy, but everybody is dealing with something. Physically, emotionally, financially, something! They empathize, but they have their own issues too. They can’t do anything about my issues and only have so much time and energy to lend me their undivided attention. Then, it’s on to their many personal issues. So, I get it!
Now, when people ask I simply say I am ok. Some days are more challenging than others, but overall I’m good. It’s not that they don’t care, It’s just that they can’t do anything about it. They don’t understand it and can’t process it. So, they politely nod and briefly appear engaged and move on to another subject. I don’t take it personal.
The reality is I find this to be true even when talking to other people with MS. They will listen briefly and are anxious to talk about their own journey. It’s human nature. I also tend to listen attentively for as long as I want. I’m careful not to allow the issues that people share to get into my being and negatively impact my spirit. I really can’t expect other people to behave any differently with me.
I recently had lunch with a friend who also has MS. I asked her how she was doing and she replied “fine”. It occurred to me that it was a profound response. My husband told me awhile back that when I am asked how I am doing, a simple upbeat reply is all most people want. Hearing specifics is too challenging…their response is to try to solve your problem or make an attempt to identify…which you have so beautifully described.
Just reading this blog for the first time, and I loved this response: so many just saying ‘fine, how are you?’ is enough. (And then I go lie down and rest!)
I should have said ‘so many TIMES just saying…’
Thank you Nicole for putting fatigue into words my family will understand. Your blog has made me think it’s wonderful to put thoughts and experiences out so others can relate or share. There is strength in numbers and if we can relate in some way to provide support, the help would be immeasurable!
Thats how i feel. Wake up tired function all day tired go to bed TIRED!.Well said .
Thank you for “once again” putting into words exactly what I feel! Beautifully written….
I enjoy reading your articles, very well written.
What meds are effective for fatigue with the fewest side effects?
Hi Nicole – This is your friend Jane from Can DO! Thank you so much for you blog – it definitely explained my fatigue. I forwarded this to my kids because I thought it was so perfectly stated to help them understand. I always think when I try to explain myself it doesn’t make sense to others but this explains it so well!!!!
Thank you Nicole. I just shared this with my boss. I was just in her office yesterday trying to explain my MS fatigue and why working from home really benefits me. You hit the nail on the head.
Once again Nicole, you have so eloquently said what a lot of us feel.
Hi Nicole, my name is Tiffany I was diagnosed this year in May. I know what you mean about the fatigue taking over your whole body, and there isn’t much you can do about it and no one will understand that no matter how you explain it unless they have MS. Often its hard to explain the symptoms we experience as being worse then what they have experienced most of the time because our bodies are in a tired state from the time we get up.