Stop pretending like you get it, because you truly have no clue!

By jesswithms

1 min read

Harsh title, I know, but sometimes an MS patient just needs to scream that out every once in a while. One of my main symptoms is overwhelming, bone crushing fatigue.

I work part time as a medical assistant and would honestly love to work full time, but because of fatigue, I’m unable to. When you try to explain that to co-workers or a manager, they look at you like… "well everyone gets tired, try to sleep more and you’ll feel better…".

If it were only that simple, right? Or the most famous line is, “I know what you mean, I’m exhausted too!” I so want to tell that person, “If I had your kind of tired, I could still manage to work full time; you truly have no clue, so stop pretending like you do.”

I have been living with MS for almost 15 years now, but have only been diagnosed for 9 ½ years. With each passing year, the fatigue becomes worse. As hard as it is to accept my limitations, I have to, sometimes I have no other choice (kicking and screaming all the way most of the time). One of those choices was working part time. I know I am physically unable to work full time due to the fatigue.

My goal is to continue to work until my kids are at least through high school. Time will tell. When that time does come, then I really will kick and scream to the top of my lungs…

Stop pretending like you get it, because you truly have no clue!

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laurav Member
Amen to that!I was originally diagnosed with having fibromygia. That doctor didn't do an MRI...9 years later I lost vision in my right eye. That's when I got diagnosed. I have since moved, have no health care, nor medication for over a year and my symptoms are worse by the day. People just don't realize when you just CAN'T do anymore like you you used to be able to.
Laura Kolaczkowski Moderator & Contributor
But you look so good, right? I'll join you in that scream ....Argh!!! This is such a difficult disease for those without MS to understand the symptoms, and fatigue is at the top of that list. I describe it to people as a weariness that if I were on the couch and the fire alarm went off, I would debate whether I would leave my house or prefer to remain prone. I'm sorry the fatigue has caused you to alter your career path. Please continue to be kind to yourself - if they don't get it, let it be their issue and not yours.
tlawrence Member
Me too! Fatigue is currently my worse symptom. I am still working full time but probably only because my neurologist put me on Amantadine. It has helped significantly but does not work for everyone. Know that you are not alone and some of us really do understand what you mean.
amybmelv Member
Amen sister! The pretending is rampant...not that everyone doesn't get tired, have pain etc,. but don't act like you get it!!! A friend told me I looked good....again I know he meant well but come on!! I just told you what I'm going through, i.e. I have vertigo/double vision, staggering/off balance... I didn't get ugly overnight so of course I look good!! Keep your sense of humor Jessica!
1. jesswithms Member
 Thanks ladies! We MSers have to stick together for sure. I have a lot of other symptoms as well, but the main one has been the fatigue. I've tried many prescriptions drugs to try to help, but either some will not work, make me too jittery or insurance will not pay for them. I do try and keep a sense of humor about for sure. Hang in there everyone!
nao19 Member
Deep Sigh...It's like you have just read and written down my thoughts!! I was just recently called lazy, I know my friend was just joking but It still had an undertone. I am exhausted all the time, the fatigue is ridiculous and the vision loss in one eye or the other. I try to explain that its like wanting to crawl under a desk or into my bed and sleep for weeks but most of the time can't even fall sleep! As well as being on an almost identical page to Amy B Mel including pain almost every day...I get the 'Well you look good' comments too but holy crap people...YOU JUST DON'T GET IT!!!! Anyway, to lighten the mood after my little rant...I wish you all the best Jessica and you are all in my prayers cause God knows this illness is no joke!