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RLS: Not an Exclusive Club

Last updated: November 2022

If you've read a few of my articles, you'll know that one of my absolute favorite things to do is meet other people with restless legs syndrome (RLS) and get acquainted with them. It's kind of my mission in life to make as many of us as I can feel a lot less alone.

A chance meeting at a recent conference

I was at a conference recently, and when it came time for me to introduce myself, as always, I added that I have restless legs syndrome. It was so off-handed because I do it almost all the time when I meet new people.

I had forgotten all about it, but after the conference, a lady caught up with me as I was leaving. She said, "I Googled you as soon as you were done introducing yourself and spend a good chunk of the conference reading the articles you've written on RLS. Do you mind if I called you sometime to talk?"

"Heck yeah!" I responded. See, I'm socially awkward, so I love when people actively try to get to know me or even just speak to me. So I gave her my cell number and hoped she'd call; I really wanted to know what her story was.

Getting to know someone else with RLS

A few days later, my phone rang. It was my newest acquaintance. She was such a bubbly person and, like me, a bit of a chatterbox. I loved every minute of our conversation.

I got to know she has restless legs syndrome but feels like she can't really talk about it or complain at all, as her case is mild compared to all the others she's heard of or read about online. She also has a friend who has RLS, and she's never dared talk about it with her, as she'd get something along the lines of, "At least yours isn't that bad."

After my conversation with her and letting her know her pain is as valid as anyone's, it got me thinking.

Everyone's pain is valid

Is this a thing? Are there people out there who think they can't speak out or even talk to others about their condition because they feel it's not as bad as that of some others?

I know I have a chronic case of restless legs syndrome, but even if I didn't, I would still talk about it. I imagine it like that one scene from The Lord of the Rings: The Return of the King where the corsair captain asks Aragon, "By you and whose army?" and Aragorn responds, "This army," and the army of the dead appear out of nowhere!

I, like Aragon, am a one-man squad who will never allow anyone to silence my pain! Everyone's pain is valid.

No matter the degree of your RLS, know that you matter

Restless legs syndrome is not some elite club where the ones who have it bad are the bourgeoisie and those who think theirs is not that bad are the proletariat. We may not have it on the same level, but we all have it. There's absolutely no shame in having fewer or milder symptoms of RLS. RLS is RLS, and that's what counts.

The more a greater number of us speak up, the higher the chances are that our voices will echo through the corridors that matter, and more research will be done — which will, in turn, hopefully, turn up a cure.

No matter the degree of your RLS, know that you matter in this community. We do not gatekeep pain. Don't muffle your voice for anyone or anything. If you need to be heard, please scream!

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