Since I’ve been sharing my battle with MS, I’ve been fortunate to talk to many people about their own struggles (which is great, because I see everything I write as the beginning of a conversation, not simply me telling you something. I don’t want to be talking at you, I want to be talking with you, even if we never actually speak. I want it to feel like that because I’m not an expert, I’m just like you). Recently, while talking with a few MS Warriors, I noticed a common issue that I thought would be great to discuss. One we’ve all dealt with at some point, the impact that small comments and advice from friends and family can have on us.
When friends and family are fed up
I’ve touched on the topic of unsolicited advice in the past, but this time, I’m talking about something a little different. I see that past article as talking about people that are really attempting to help you. What I am talking about here, is not just advice, but also comments, from friends and family that are a bit fed up with your disease. “Maybe if you exercised more”, “You always seem to have these problems when I’m around”, “Of course, I didn’t think you’d make it anyway”, “You look fine”, “Your problem is you take too many medications”, “suck it up”, “maybe if you were more positive”. Sometimes there isn’t even anything verbal, sometimes it’s simply a look, a roll of the eyes. These comments, tips, and expressions all have one thing in common: our illness has inconvenienced you.
Plans don’t always work out
It’s happened to me too, many times, usually with family more than friends, which seems to be common with many of us. I’ve had plans, and instead of canceling, I actually give it a try and it doesn’t work out. I have to leave early, or I look pained, or have some other difficulty. Things don’t work out the way people thought they would, I’m not acting or looking the way people expected, all because of my illness, and then I get a snarky comment. Wow, nothing like making a sick person feel down. It usually ensures that I won’t even try the next time, I’ll just cancel or not even make plans. Which will inevitably create a comment down the line about how I am never around, which is always a real face palm moment for me.
How these comments affect me
You start to feel like you can do nothing right. That nothing is good enough. We already feel isolated because few people can actually understand what we go through. When someone gets frustrated and makes a comment, it can be the straw that breaks the camel’s back. I get it, you’re frustrated, but if we are out, making a go of things, you have no idea how hard we’re trying. When my illness is suddenly more visible, making a nasty comment or a passive aggressive comment is only going to worsen my condition. Many a time have I had to deal with a passive aggressive comment from a family member. “Oh, it must be me” or “This only happens because of me” NO, it happens because I have an incurable and wildly unpredictable illness.
We’re trying so hard
Instead of sticking up for ourselves, more often than not, we’re just going to take it to heart and feel even worse than we already did. We’re always trying so very hard to be normal, to be like you. Yes, you’re frustrated, but we’re even more frustrated. A quick comment that you may deem innocuous can destroy us. There is a reason so many with MS suffer from depression, these small remarks from friends and family 100% contribute to and worsen that. I really can’t emphasize enough how much this can affects us, how it isolates us. Even now, I can almost hear certain people saying “oh, I guess I’ll just walk on eggshells around you”, which is both them missing the point and a sign of how much this behavior affects me, that I immediately hear that in my head.
Think twice about what you say
So what do I want out of this? Well, I want people to read it and think twice about what they say to people. Remember that just because we may look OK, doesn’t mean we aren’t struggling within. A smile masks a world of misery. I realize this is more of a rant than I normally write, but consider this venting for my readers. Many of you want to say this, but can’t. Well, I hear you, you aren’t alone, this happens to me too, and I will gladly speak up.
Thanks for reading!