In the past if someone were to ask me what my best feature was, I would without hesitation say my smile. People would always tell me that they “loved my smile”. I had a full set of pearly whites and was proud that my brightness could turn someone else’s frown upside down.
Eight years ago, my gnashers worked wonders for me, I could chew to my heart’s content, opened bottles with them, tear through things with them, and most importantly I could smile fully and widely without being self-conscious or ashamed. Eight years ago, I went to the dentist for a routine appointment, happily believing that all would be fine but was horrified to find out that I needed “FIVE” fillings. I was even more displeased when my dentist told me that she had no idea why my teeth were in such bad condition, especially as my oral hygiene seemed fine. Previously, I’d had one filling, a root canal and had to have a wisdom tooth removed, but other than that my gleaming set had been in great condition. I had all the fillings done at once and tried to forget about it and move on. Roughly six months after my freaky filling appointment I noticed my teeth chipping, and my gums no longer framing my ivory gates the way they used to. My gums started to feel inflamed. I’d often be in unbearable pain, I experienced ulcers not just on my gums, but on the roof of my mouth, and on my tongue.
I went back to my dentist a few more times and was told to speak to my GP. I was instructed to do the normal, brush, floss, gargle. But none of the issues were going away. It was the presence of the mouth ulcers as well as my scalp lesions that in June 2018 (almost a year later) led me to be diagnosed with SLE.
Chewing became painful, my jaw would lock, or I’d get shooting pains from moving it, and therefore eating wasn’t something I looked forward to. I had to change from using my electric toothbrush to a manual extra soft one. I was told to use fluoride toothpaste which I still use now, and was prescribed mouth spray and mouthwash to help numb my mouth so that I could brush my teeth and offer some pain relief.
By the end of 2019 I had 2 chips in my front teeth and my second bicuspid on the left side was broken leaving half a tooth. By the end of 2021 and numerous attempts at repair, I had to have that tooth removed. The following year the exact same tooth on the right side started to crumble, and after multiple attempts to save it, last year I had to let it go.
When I presented my issues to my rheumatologist, aside from the ulcers, he wouldn’t agree that my actual tooth loss and gum problems were lupus related, and therefore it’s not recorded in my rheumatology notes. My dentist and other consultant dentists on the other hand concurred that both lupus and the secondary condition of Sjogren’s have been the cause of me slowly losing my smile.
I turned to the lupus community for answers and reassurance that I wasn’t alone in this. I wanted to know, was anyone else suffering with their teeth and gums? I was shocked to see how many of us were, and how bad it had become for some people. The voices of others with lupus, spoke loudly and affirmed my belief that both SLE and Sjogren’s were responsible. I struggle to understand why rheumatologists are so rigid in their understanding of the illness, when simply accessing the forums we express ourselves in, could tell them a lot about what patients actually go through.
There have been a number of studies particularly in America, that confirm the link between SLE and Oral Issues, e.g. A 2020 study by the Lupus Foundation of America evidenced that there’s a link between gum disease (Periodontitis) and SLE. More links to studies below.
What’s even more frustrating is that dental work to repair and preserve the gums and teeth, like other lupus issues, is not free for lupus patients. I’ve spent hundreds on dental treatment and appointments since being diagnosed, and unfortunately there is nothing I can do to other than try to keep my condition managed to stop further deterioration.
In the past I took for granted how important all my teeth were for the sake of just eating. I’ve also had to have some teeth removed from the lower back of my mouth and honestly eating simple foods can be WORK. But as with everything we learn how to adjust and swallow it.
When I see myself in the mirror or in pictures, at times I can feel so embarrassed. I hate seeing the gaps. I’ve enquired about dental implants, but was warned against them as it was seen as an unnecessary surgery that could trigger a flare due to the presence of the new metal in my mouth. But it might be a risk I’m willing to take. I’ve tried hide the gaps in my smile, I try not to bare my teeth when I grin, and keep my mouth closed, but a full smile is automatic for me and so it should be. Nothing should dampen my expression of joy. I’m definitely not at denture wearing stage and for that I’m grateful, I’m just trying not to let insecurity keep me from sparkling.
References:
Study Confirms Association between Lupus and Gum Disease | Lupus Foundation of America
Oral Complications in Sjögren’s Syndrome and Chronic Dry Mouth
Sjögren’s Disease | National Institute of Dental and Craniofacial Research