Ask Our Health Leaders: RLS Stigma and Finding the Best Care

It is estimated that 7 to 10 percent of the population has restless legs syndrome (RLS).¹

RLS causes uncomfortable sensations in the legs and other parts of the body. It also causes an irresistible urge to move, most commonly in the legs. A person with RLS might feel the constant need to keep their legs and arms moving to relieve these sensations; they might pace the floor, shake their limbs, or toss and turn in bed. Symptoms can onset at night when going to bed or during the day, and severity varies from person to person.¹

Because RLS can be both an invisible and visible condition, people with RLS might face social stigma and even medical gaslighting.

To gain more insight into these issues and how they affect people living with RLS, we asked some of our Community Health Leaders to share their perspectives on dealing with stigma and discrimination in their personal lives and in medicine.

Social stigma surrounding RLS

Q: Have you faced discrimination or stigma in daily life because of your RLS and/or its symptoms? In what situations have you experienced this, either in the medical field or in social settings or interpersonal relationships? How did you resolve these situations, if at all? How can other people who don’t have RLS be more supportive of those that do?

Simone Yemm

I have had previous doctors that did not consider RLS to be of significance. There is an overwhelming sense of frustration when walking away from an appointment that achieved nothing.

I have also experienced varying levels of frustration from people around me when I quite simply could not keep still. When I sang in a choir I was asked to try and stand more still as my movement was a distraction. That was very embarrassing. Having active RLS meant I always sought out the most isolated spot to sit so I could distract people as little as possible.

It meant getting up and going for frequent walks whenever I could. It meant going to the theatre or a concert or the cinema was pretty much a high-stress experience, as the fear of having RLS settle in always overwhelmed the joy I should have felt for being there. So I often didn't go.

With good pharmacological management of symptoms, these things are no longer an issue for me, and I am very grateful.

Nikki Albert

Not really. Or not in any obvious sense. I look like a fidget a lot because, well, I don't ever sit still. And sometimes get up to walk around. But I face a whole lot more judgment due to chronic pain, so I'm not sure I would notice. I do know that when people find out I have RLS, they don't know what it actually means to have it. So I do face a lot of curiosity, mostly because of the name.

It implies it is only in the legs, and 'restless,' so I have to get into what it actually means. I swear they just think I am antsy-in-the-pantsy at night. I am like, yeah, no — actually it is like those ants are on fire and I need to move my legs, arms, and whatnot because I have to, not because of mild discomfort. Like maybe it will put out the fire but it doesn't.

Ray Li

I recently wrote an article about this.

I hate being told that I am too young to have RLS. RLS doesn't care what age someone is. Never tell someone they are too young to have a disease.

I also have been told that because I don't suffer a certain way with my RLS, I don't have the disease. Everyone experiences diseases differently; it doesn't mean someone is faking just because their symptoms are mild.

Experiences with healthcare providers and RLS treatment

Q: What has been your experience with finding a healthcare provider to treat your RLS? Do you have a trusting relationship with your HCP or not? If you have a good relationship wth your provider, what are some things that make it so positive? And if you’ve had trouble finding care, why? What are some improvement opportunities you’d like to see in your clinician(s)?

Simone Yemm

I have a wonderful, wonderful doctor and I am so grateful!

I had to test the waters with a few different doctors over the years, some of whom were more helpful than others. My current doctor takes time and listens. She cares about things — whether they seem big or not. She looks for solutions, both medical and lifestyle. She can be cautious with prescribing medications but will also make sure I am not suffering.

I also love that she is willing to seek the advice of specialists when she feels her own level of expertise may be exhausted. I have multiple issues that she treats me for, and I feel she understands my health and well-being extremely well. She takes my RLS seriously and is aware of the substantial negative impact it can have on everyday living. As such, we have worked together to find ways to manage my symptoms. I think she is great and I'm very thankful to have found her.

Nikki Albert

I wasn't diagnosed until it was insanely severe, and I asked my neurologist about it. I see him for chronic migraine disease. Until then, sort of a non-issue for my doctors.

Even my neurologist, when it comes to RLS, had to refer to a textbook he has on hand for RLS cases — which is sort of good that he has that on hand instead of just assuming things, and sort of not good because he isn't exactly up to date on research.

I wish that he knew all the recent research rather than just giving me the go-to medications. Those medications do help, but I adapted to the first one fast, and I am already on another one.

Ray Li

When I first spoke to my GP [general practitioner, a primary care doctor] in my 20s about the possibility of having RLS, he just agreed it sounded like RLS and nothing further was done about it. I ended up firing him for different reasons.

When a sleep study was done for different reasons, I was officially diagnosed with RLS. The sleep expert was knowledgeable and knew that because of how long I had had RLS, no amount of exercise was going to stop it.

I'm experiencing augmentation [the worsening of symptoms with certain medications] now, so I have to talk to my new GP about this. She's way better than my last 2 GPs.

Have you faced social stigma or medical gaslighting because of your RLS? Share with us in the comments below.