Have you ever heard someone tell you, “It must be nice,” when speaking about your multiple sclerosis? Well, if you haven’t, then you’re very lucky! However, if you have had someone say the words ‘nice’ and Multiple sclerosis in the same sentence, then I know how you feel. When someone first said that to me, I didn’t have a response. I just sat there, with my jaw almost touching the table, from being in shock and wondering if I heard the person correctly.
The most recent time I was told, “it must be nice,” that I have MS, was in regards to my two-hour long infusion of Tysabri. I mean, I’m sitting there for two hours in an infusion center, with an IV in my hand/arm getting pumped full of medicine. What is so nice about that? Well, apparently… the reason they stated that is because I get to sit there for two hours in a recliner instead of having to work.
Now first off, when I’m getting my infusion, I’m still working! But yeah, apparently having to getting medicated by an IV on a monthly basis is something to look forward to? I guess I never got the memo…
Another time I was told this… was when I had to go to the ER for pain meds because my MS caused a migraine that made me dizzy and nauseated. I didn’t know being ‘dizzy and nauseated’ could be considered nice but apparently, they were speaking out about the fact that I got shot up with pain meds. Well let me tell you, having migraines severe enough to take me to the ER is in NO WAY nice, and the bill you get from the ER is very far from being what I would consider nice. Instead of reacting the way I wanted to, I walked away, because I didn’t want to go to jail.
Are you tired of the word nice yet? When it comes to the phrasing I’m writing about, yes I am very tired of hearing it.
I know I’ve discussed a list of “MS & Things People Should NOT say” but I wanted to really touch base on this particular phrase because I’ve been hearing it frequently over the years, and for some reason, I’ve been hearing it a lot recently.
One more time I wanted to talk about, in regards to MS and fatigue. You know what I’m talking about most likely, because you probably deal with it on a regular basis. So when I said that I have to take fatigue medicine in order to not sleep all day, even though I slept throughout the night. I was told… you guessed it, “it must be nice.” But this one is a bit more complex.
I was told it must be nice to have an excuse to sleep all day if I wanted to. But also that I had the ‘option’ to take something to give me energy so that I could get things done throughout the day, and not have to deal with being worn out, like ‘normal’ people. Are you sitting here dumbfounded yet? Do people have NO commonsense when it comes to being courteous???
The sad part is that when these certain naïve people make such rude comments, there is no positive outcome if you react to it. Because they are never going to fully understand what we go through on a daily basis. But for those naïve people that might be reading this, or told to read this, here is a little run down.
Having an incurable chronic illness is no way nice, fun, an excuse, cool, etc. Having to get a two-hour long infusion, that has a possibility of causing PML with me being JC Virus Positive, is in NO WAY fun. Getting an MRI is not ‘nap time’ and is not comfortable, and is not fun at all.
Being so tired that it makes you miserable, and to the point that you miss out on things you really want to do is not fun/nice. Having to sit in the hospital to get your pain under control, is not nice, neither is paying for it.
Oh and one more thing that I’ve been told ‘it must be nice’ about. Having a Handicap Parking Placard is not nice. Do you know what kind of looks I get, being a 28 year old that “looks fine” using a handicap space?
So for those people that are small minded and say hurtful things to boost their ego… just stop saying things that are hurtful. Don’t ever imply that someone with a chronic illness is using it as an excuse, is lazy, or is ‘taking advantage’ of it and has it ‘easy.
Anyways, I just needed to vent a bit, and also let others know that they aren’t alone when people say rude/senseless things. Until next time!