Angry little monsters riding on a spear directed at a runner's Achilles Heel in ancient Greek pottery style.

What I Mean When I Say I Don’t Feel Well

Every so often everyone has one of those days where they just don’t feel well. The start of a cold? The flu? Just working too hard on too little sleep? We all know what that feels like but when someone with Multiple Sclerosis (MS) says that they are not feeling well? There is a pretty good chance that they mean something completely different, and more often than not, people just don’t get it. They don’t get how me not feeling well with MS is not the same as what they (probably) think “not feeling well” means.

On one hand? Yes, people with MS still get sick and the exhaustion of life still gets us too, but even just those mundane ailments can knock us down for the count as they tend to hit us with a little more force, causing a simple cold to be a little more exciting than we would like. On the other hand? “I don’t feel well” could have absolutely nothing to do with the things you might associate with “someone not feeling well” because there are obviously things that an autoimmune disease of the central nervous system can cause a person to feel that someone who is otherwise healthy may never experience in their life. So let me tell you what I mean when I say, “I don’t feel well”.

Always getting sick prior to MS

First, I’ll tell you a bit about my own experience with simply “getting sick”. Throughout my childhood, I can remember getting sick every year at the same times, as though I were on some sort of annual schedule. It was so routine; everyone else in school has a cold? I get a cold. Flu season? That was the worst. It always hit me hard and always during the holidays, so a lot of my childhood memories of “the most wonderful time of the year” have to do with me lying in bed with the chills next to a bucket for “just in case I can’t make it to the bathroom in time and for some reason don’t want my stomach contents all over the floor”. As I grew a little older, that all calmed down a bit, but then in high school I got mono really bad, and that was just a terrible experience. And then after that? I almost never got sick. Now that was around the time that I was diagnosed with MS so maybe that is when my immune system “woke up” and went into overdrive, indiscriminately destroying everything in its path, be it friend or foe.

A crack in the armor

But after MS came into my life, I actually started to feel like I could walk around a hospital without a mask during some sort of outbreak of a deadly virus and I would walk out just fine because I never seemed to get sick anymore. As stupid as it may seem, I felt somewhat untouchable when it came to getting sick. Maybe that had a little to do with my age and me trying to look on the bright side of my new life, but that illusion soon ended because, well, after a while I eventually did catch a bug. A simple cold now felt like my worst flu growing up; it was like MS, though usually a powerful “armor” against viral infection, had exposed some sort of Achilles heel in my immune system that when touched by some kind of virus would completely bring me down.

On top of that, when this would happen? My MS would flare up adding sometimes painful neurological symptoms to a little cold that MS was already making a thousand times worse. Now, since then I have greatly suppressed my immune system with different disease modifying therapies, so I now have to be really careful not to get sick because when I do it literally hits me harder as I don’t have as strong an immune system as I once did. So when I say “I am not feeling well” because of a cold or something? I am not just being a baby about it because with my now weakened immune system, it does not take much to suck all the strength out of me, drain what little energy I have, and totally knock me down, causing my body to be almost totally “useless” for however long it takes to get better regarding both my cold or flu and my flare of MS symptoms.

Some days are worse than others

But a lot of the time when I say “I am not feeling well,” I just mean it’s a bad day for my MS. For me, maybe it was just the stress from yesterday, a lack of sleep, or the heat of the day that is causing me to not feel well. A lot of the time that means I am extremely fatigued (more so than usual), dizzy, unable to see clearly, in pain, or too weak to want to do anything but lie down. But we all have our various triggers, and we all have a different assortment of symptoms that tend to haunt us on those especially bad days, so this is the point I want to make clear because it is what I have personally found to come up over and over again.

Yes, I am always tired; I battle fatigue (for example) every single day, but like all other symptoms, some days are worse than others. Simply put, it’s no different than pain. Maybe you just got a paper cut? Or maybe you broke your arm? Both “hurt” but one hurts objectively worse. So when I say, “I don’t feel well” and then you say, “you never feel well”? You are not understanding that there are varying levels of severity of the symptoms that I live with, and despite me looking like nothing is wrong, these symptoms? Though they were not too bad yesterday, might just be killing me today.

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