Key points to know about burning mouth syndrome:
- Burning mouth syndrome is an invisible condition – people can’t see it, which makes it harder to understand.
- Burning mouth syndrome is, literally, a burning pain in your mouth or on your lips.
- No specialty has taken ownership of burning mouth syndrome, although specialists in oral medicine are the ones who treat it and write about it most.
- More women than men develop burning mouth syndrome.
- Burning mouth syndrome is not contagious.
- Burning mouth syndrome is rare.
Do You Have Burning Mouth Syndrome?
If you have burning mouth syndrome or suspect you do, you likely haven’t found much reliable information on the condition. You might have found a few sites that mention it and maybe a few studies, or you joined a few Facebook groups. But the reality is, there’s little solid information about this very painful condition. The major health sites, like Mayo Clinic, Cleveland Clinic, Johns Hopkins Medicine, and WebMD.com do have a BMS section, but they all say pretty well the same thing.
I have several theories about why this is.
BMS is invisible.
There are many invisible illnesses that are common, like diabetes and heart disease. But since so many of us know someone with these types of invisibles illness, we’re aware they exist and most people have a general idea of what they are and what they can do to someone. There are ads for heart drugs and diabetes drugs. There are multiple articles online and in print on how to take care of yourself to either prevent these diseases or how to live better with them. But if your invisible illness is rare – or as my friend wrote in this Harvard Women’s Health Watch article, opaque – it’s even harder to get attention.
Most people can’t identify with a rare disorder like BMS because they have nothing to measure it to – and no one is going to look into it. Burning mouth is truly invisible. Although there is a burning searing pain, there is nothing to show for it. For most people, there’s no redness, blistering, or even sloughing tissue. There is nothing there.
No one specialty takes ownership of burning mouth syndrome.
A neurologist may do a study on multiple sclerosis, an endocrinologist on hypothyroidism, an ophthalmologist on macular degeneration, and so on. No one “owns” BMS although oral medicine specialist and oral pathologists do have the most interest. Studies are done by physicians and researchers in other fields, like neurology and dentistry.
Burning mouth syndrome affects more women than men.
It’s undeniable. Diseases and conditions that affect more women than men get less attention. This article, published by Norwell Health, articulates it better than I can: “There’s a dirty little secret in health care that doesn’t get the attention it deserves: Female patients are continuously gaslighted about their physical and mental health.” The gender bias that exists in medicine makes it so illnesses that affect more women than men get much less attention and research.
BMS is not contagious and not fatal.
BMS isn’t contagious; you can’t pass it on to someone else, so it’s not a public health issue. Physically, BMS isn’t a fatal or considered serious. It’s painful. It affects quality of life, but it doesn’t lead to death. At least not directly. But do we know the true impact of living with such severe pain 24/7? There are people with BMS who are malnourished because they can’t eat a proper diet. There are those who are so depressed that they may be thinking that there has to be a way out. But, unlike heart disease or other such illnesses, there is no direct connection between BMS and staying alive.
Burning mouth syndrome is rare.
Right now, the little bit of literature that exists says that BMS is rare. Rare conditions get little attention because even if there can be treatments or cures, pharmaceutical companies won’t make their money back on their research. A part of me wonders how rare it really is though. Could it be that people have BMS but never tell anyone because they’ve never heard of anything like this before? Or they do mention it to their family doctor or dentist, but are told that it’s just something they have to live with? There’s no database for BMS and numbers aren’t compiled even if people do report it.
