RLS: What Not to Say

I have had restless legs syndrome (RLS) my entire life. I have zero recollection of being a still and rested person. For better or for worse, that just isn’t me. I always have a toe tapping or a leg jiggling or I am doing endless pelvic floor exercises in the hope nobody will notice the movements. I have learned in life that not everybody understands this incessant need to move all the time.

My restlessness is sometimes embarrassing

My husband sits in his chair and stares off into space. Doing nothing. Just looking like a living, breathing statue. I do not get it. Sometimes I am envious of his ability to sit so still — especially if we have gone to the cinema together. He can quietly enjoy a movie without the constant distraction of involuntary movement. For the most part, I just cannot relate to his stillness.

There have been times when my restlessness has been embarrassing. When I sit with a group of people and my legs jiggle so much that I am distracting all the people around me. And I haven’t even noticed I am moving. When I sit in confined spaces and inadvertently vibrate the seats around me. And I haven’t even noticed I am moving.

Eventually I will realise and try to stop it, but occasionally people point out my wriggling and I feel mortified. It is very embarrassing.

Things not to say or do to someone with RLS

1. It is not helpful to ask me if I need to go to the toilet. I’m 56 years old now. I have worked out when I need to go and I go off and do it. I am not doing the toddler toilet dance.
2. It is not helpful to ask me to sit still. I can’t. If I could I would. I can redirect the movements when I am conscious of them, but sitting entirely still for extended periods of time is just not possible.
3. It is not helpful to glare at me as though I am deliberately causing you annoyance. I don’t like being so fidgety. It is not a choice. It is a neurological condition that causes an overwhelming and uncontrollable urge to move.

Helpful language and actions to support someone with RLS

1. If I have been jiggling for a while, it is helpful to gently point it out so I can redirect the movements or find a more spacious spot to sit. Or, most likely, I will stand up and wander around if possible.
2. It is helpful to be kind. In all situations in life. People rarely want to irritate you just for the sake of it.
3. It is helpful to offer distractions because sometimes when my mind is very busy the movements can calm down.
4. It is helpful to be patient. We can all benefit from tolerance and understanding.

Go gently with people

I have never known a life without RLS. I am not the kind of person who wants to annoy other people. I don’t like it when I realise my subconscious continuous movements have caused a whole row of seats to start vibrating. I will try and do something about it when I realise but it is embarrassing to be glared at or reprimanded.

If there’s one thing I’ve learned in all my years, it’s to go gently with people. We’re all just trying our best.