"What Are You Doing?": When Masking My Symptoms Doesn't Work

Most of the time I am a pretty chill person — even when it comes to pretty aggravating symptoms of chronic illness. I have been called "stoic" in the face of chronic pain a number of times. I think many people do develop a level of that in order to function.

When are my symptoms 'important enough' to 'bother' someone about?

I bring stoicism to a whole new level with all my illnesses. I am just exceptional at masking them. At "not making a fuss." At not being attuned to when I really ought to mention that to my doctor sooner rather than later. Because I take the wait-and-see approach — just wait and see if it gets worse and intolerable and "important enough" to "bother" someone about.

I am very aware this is my response to the stigma around me, that people think many of us are exaggerating and so forth, and over the decades from childhood onward I just learned to hide it better and better and downplay everything. I am also aware this is counterproductive to my overall well-being, and I am really trying to stop that.

The more you hold still, the more you need to move

When you start getting RLS symptoms in the daytime, even mildly, it makes a notable impact. You change positions a lot. Shake your legs constantly, or a foot. Then the next leg or foot. Go for a walk-about. So much so that it becomes a habit, ingrained in your very nature.

Maybe people thought of me as someone who fidgeted a lot or was nervous. I’m not even sure. I wasn’t even aware I really had RLS, so I wasn't even sure why I did it, except that it helped with my antsy feeling.

Even had I been aware it was daytime RLS, it isn’t the sort of thing I could be stoic about, because the more you hold still, the more you need to move.

Trying to ignore the sensations just makes them worse

In the present, when it comes to RLS and my daytime symptoms, they can be much more intense at times. And me, being me, I do sometimes really try to ignore them. I don’t want to take any medication early, for one thing. And I know with my more severe symptoms, movement isn’t going to help and it's just going to drive me up the wall.

But ignore it and, well, it just gets more and more nuts with that pulling sensation. That jerking need to move. Actually, sometimes I do a sudden jerky, twitchy kick, as if my body can’t resist the need to move. Or maybe it is muscle memory from that self-defense class I took taking over? Either way, make sure you are out of kicking range is all I am saying.

"What was that all about?"

This ticks me off — that it is so nuts sometimes during the day. I get so frustrated and distracted from what I was doing. I rapidly do several kicks and shakes of my legs or rapidly, violently shake my hands since my hands have been a frequent location for RLS lately, too. So, apparently, I'm not so stoic when it comes to RLS.

My boyfriend will look over and ask, “So, what was that all about?”

And I will reply along the lines of, “I am having a serious argument with my RLS right now,” but insert the swear word of your choice in there.

I wish I could just reset the system

Obviously, that fit of kicking and shaking did nothing but feel emotionally good for a second. It is just that is how frustrated I get. And just as obvious is that I end up having to take some medication to handle the bout before I go insane with it. Then I have to wait for it to kick in, which equally ticks me off.

Still, I do wish some violent kicking and shaking would just reset the system. That would be totally satisfying.