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When Your Chronic Illness Causes Dental Issues

Katy Harney
Four colorful toothbrushes on blue. Group of y toothbrushes on a blue background.

We all grew up learning you should brush your teeth twice a day, floss and see a dentist for regular checkups. We learned that on occasion you might have a cavity that will need to be filled or perhaps crooked teeth that may require braces. For many, this is the extent dentistry concerns will impact their life. However, for me and so many others who live with similar conditions, dentistry takes a far more important role.

For us, dental issues are health issues.

For example, one condition I have is called Sjögren’s syndrome. It was first suspected that I may have Sjögren’s in my 20s by my ophthalmologist because my eyes were so dry. I have punctual plugs inserted into my tear ducts to make them tear normally and still have to use daily eyedrops. The diagnosis was later confirmed by my rheumatologist, and I’ve been living with Sjögren’s for over 15 years. People who have Sjögren’s syndrome have a variety of health issues. One issue is the inability to produce adequate amounts of saliva. Sjögren’s is also a condition that often accompanies other immune system disorders. For example, I also have ankylosing spondylitis and arthritis, to name a couple.

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With Sjögren’s syndrome, the mucous membranes and moisture secreting glands of your eyes and mouth are usually affected first — resulting in decreased tears and saliva. Sjögren’s can also affect other parts of the body such as the joints, thyroid, kidneys, liver, lungs, nerves and skin. Sjögren’s shares many similarities to multiple sclerosis as well. Saliva contains important elements such as bicarbonate, calcium and phosphate. They not only neutralize plaque acids, but also help repair early tooth damage and decay. If dry mouth persists for months or years, the decreased salivation can lead to many oral complications such as progressive tooth decay, loss of teeth, oral infections and difficulty swallowing. Individuals who live with Sjögren’s syndrome will likely require a much greater amount of dental work than the average person without Sjögren’s. Unfortunately, this does not change the fact that Sjögren’s cruel effect on the teeth is not treated as a healthcare issue.

For example, I’ve had to pay at least 40+ thousand in dental care treatments over the years, and that doesn’t include what my dental insurance has also paid. Unfortunately, even very high standard dental insurance is very limited on how much it will cover. As a result, people like me are stuck paying thousands of dollars for procedures that are the direct result of a disease rather than improper dental hygiene, something I work extraordinary hard to maintain. I belong to an online support group for other people who have Sjögren’s syndrome and the topic of dental work comes up quite often. There was one thread recently that I found rather disturbing. Many people were talking about how they were just having their teeth pulled because it was cheaper. One person in particular said that she went to Mexico to have her teeth pulled because it was so much cheaper. I find it so heartbreaking to hear their stories of how they felt they had no other choice but to have their teeth removed and go with uncomfortable dentures because they could not afford the more expensive dental procedures, even though many of these people are still considered rather young.

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I myself have been very blessed to have been able to afford these procedures, but even still, it frustrates me that I have had to give so much of my hard earned money to dental work. Of course, I would much rather use that money on maybe a vacation, retirement, help at home (since I am chronically ill), kids’ college, etc.

Another condition I have that can be affected by dental work is trigeminal neuralgia. Having this disease means that dental work is more painful for me due to nerve damage. I require the highest level of numbing agent and multiple injections, and I usually suffer with much higher levels of pain than the average person having a dental procedure. The pain tends to last longer after a procedure as well.

Also, because I take immune suppressant medications, infection is also a huge concern. If all that was not enough to make dental appointments extremely terrifying, I am also prone to airway issues and allergic reactions. I have had an anaphylactic reaction in a dental office before that landed me in the hospital. This was a life-threatening situation that could have been prevented if the dentist had been more cognizant of my healthcare issues (which I did inform him of). I have also had a dental implant surgery go so bad, it ended in a lawsuit. The implant needed to be removed and I required several other follow up surgeries, bone graphs and permanent scarring to my mouth.

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Another important piece to consider when we’re discussing dental care as a healthcare issue is the fact that there is more and more evidence showing that dental health can have a direct impact on one’s physical health. There’s research showing that poor dental health can contribute to cardiovascular disease, Alzheimer’s, and infertility issues just to name a few.

So the big question is, if oral health is so important, how come it’s not incorporated into our physical health screenings and medical treatment plans? How come dental procedures are not covered as part of our healthcare insurance? I personally believe this is something that needs to change.

In the meantime, my best advice for anyone who has a health condition that affects their oral health is to make sure you find a dental professional who really knows what they’re doing. Make sure you find somebody who is educated not only about teeth, but about your health conditions that may affect the teeth/mouth or a proposed treatment plan. Even if you have to interview hundreds of dentists before you find the right one, it is worth it to have someone you truly trust and feel safe with. I have had countless dental professionals over the years, probably more than I can count, but there have only been two who have truly treated me with real compassion, showing an interest in my health conditions and making my dental procedures go as smoothly as possible.

I’ve had some pretty bad dental experiences as well. Not only did I have the one that ended up in a lawsuit, but I have had several other negative experiences. I had one dentist who actually asked me how long I would live because if I wasn’t going to live that long, it made more sense to do a bridge rather than an implant. He then proceeded to tell me how my disease would likely be fatal right in front of all of his staff. I left that appointment in tears. I will never forget it because not only was I in excruciating pain since that dentist didn’t know how to properly manage pain levels for someone with nerve issues, but my face quickly became quite swollen and bruised from his rough manhandling. All of that discomfort accompanied by the tears resulted in me actually pulling my car over and calling my spouse to come get me because the pain was so severe I couldn’t drive.

Now, please don’t get me wrong, even though there are a lot of horror stories out there, that doesn’t mean there aren’t great dental professionals just waiting to be found. In fact I have found two really wonderful dentists in my searches.

In conclusion, I hope that some day dental care and healthcare are treated as one. I hope that one day people who have diseases like Sjögren’s syndrome will be able to get the proper care they need on their teeth without having to pay thousands out of their own pocket or setting up GoFundMe accounts. I also hope that in the future, more dentists will take the time to learn about health conditions that may affect a person’s oral health, and they will remember to treat their patients with compassion and sensitivity. After all, our smile is an important part of who we are and we should be able to be proud of it.

Read more stories like this on The Mighty:

How I Went From Being Seen as a 'Worried Well' to Being Diagnosed

When Your Pain Begs to Be the Center of Attention

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