By: Ms. Karen Davis, RDH, BSDH

Invisible pain is the reality for many living with autoimmune diseases. A part of their body is being slowly attacked by their own immune system and that often leaves behind chronic pain, debilitating fatigue and brain fog. Yet, to look at the individual, they look just fine. The paradox of looking good on the outside but feeling unwell on the inside is often perplexing to those observing and not experiencing the same reality. The energy zap created by navigating this paradox amidst personal, work and family responsibilities can also be challenging or even debilitating. The Spoon Theory of living with chronic illnesses such as autoimmune diseases helps give context to this invisible pain and the energy required to function daily.

Christine Miserandino developed the Spoon Theory metaphor in her effort to describe to a friend what it is like to live with a chronic illness. She grabbed a handful of spoons, which represented the energy required to complete various tasks. As someone living with a chronic illness, “Spoonies” have limited energy for each day, so use of their limited number of spoons requires much consideration, planning, and often, alterations in plans as spoons are depleted throughout the day. For example, a Spoonie begins each day with 12 spoons. Taking a shower and getting ready for work might require two spoons. Preparing breakfast is another spoon. Working at their job normally requires five spoons, but sometimes unexpectedly requires more. Driving home after a long day of chronic pain and fatigue might take three spoons, and so on, but once their spoons are gone, they are gone, and the only way to replenish more spoons is to stop, rest, and recover; otherwise, the invisible pain intensifies. Individuals not living with limited spoons keep going until necessary tasks are done, but Spoonies operate with a limited supply of energy depending upon the invisible pain of any given day and the “spoon-sucking” events they encounter.

Let’s consider how being a Spoonie might impact the patients we care for. Most patients living with autoimmune diseases have learned the art of resilience. They may arrive to their appointments with their typical smile and/or social graces, but if they are experiencing a day clouded with internal symptoms, fatigue or elevated pain, they may be “low on spoons” for their visit. If so, it could impact their ability to fully listen to customized homecare instructions or explanations for much-needed dental treatment. Additionally, many patients living with autoimmune diseases and chronic illnesses have higher levels of chronic inflammation in their bodies and often have increased susceptibility to periodontal diseases and/or dental caries. Their clinical presentation may reflect living with patterns of high symptoms, coupled with low spoons, which can impact successful daily oral hygiene strategies. At first glance, it might appear as though these patients just need to step up their oral hygiene, but living with limited daily spoons, and increased susceptibility to oral diseases become significant risk factors in and of themselves.

Consider how this sampling of published data provides insight as to the increased susceptibility for oral consequences in patients living with chronic illnesses.

• Patients with Type 1 Diabetes had higher caries rates, lower salivary rates and higher bacterial loads in saliva and biofilm compared to controls.¹
• Patients with Lupus had lower oral bacterial diversity, and significantly lower pH and buffering capacity compared to controls.²
• Patients with Sjogren’s Syndrome had significantly higher decay rates requiring more invasive treatment compared to controls even though the majority of the patients with Sjogren’s brush twice daily compared to the majority of controls that brushed only once daily.³
• 70% of patients with Rheumatoid Arthritis suffered from periodontal disease, with 30% of those being severe, compared to only 30% of controls having periodontal disease and only 5% of them being severe.⁴
• Methotrexate, used in the treatment of Rheumatoid Arthritis and Crohn’s disease, can cause oral ulcerations, ulcerative stomatitis and mucositis.⁵
• Biologic drugs used for immunosuppression to treat various autoimmune diseases can contribute to opportunistic infections in the oral cavity such as candidiasis.⁵

So, how can dental professionals help Spoonies achieve improved dental outcomes? Here are a few suggestions:

• Ensure your medical history forms include inquiries about living with chronic pain, chronic fatigue, depression, and restricted diets to help identify patients living with limited spoons and/or increased risks.
• Make the comfort of dental appointments a premium for your patients living with chronic illnesses with the use of everything from neck pillows, blankets, topical anesthetics and desensitizers, as indicated.
• Identify patients using immunosuppressant medications and become their advocate for disease prevention of oral inflammatory conditions and remineralization of tooth structure.
• Maintain a broad resource of products to alleviate xerostomia since many patients suffering from chronic illnesses also have diminished salivary flow as a side effect of medications and/or the disease itself.
• Recommend strategies that require fewer spoons for daily disease control such as the use of power toothbrushes, power water flossers or interdental picks.
• Provide written instructions and product recommendations requiring follow-up, to ensure patients have important information following their visit rather than verbal instructions only.

Once the message of The Spoon Theory began to spread, it resonated immediately with individuals worldwide struggling with chronic
pain, fatigue and management of their health as a full-time job. Social media offers global, regional and local Spoonie groups for shared ideas and support. Understanding The Spoon Theory will enable you to be a better friend, neighbor, co-worker, or dental healthcare provider to the Spoonies around you.

Click HERE for a full list of references.

Ms. Karen Davis is the founder of her own continuing education company, Cutting Edge Concepts®, and practices dental hygiene in Dallas, TX. She maintains a column in RDH Magazine and serves on the Corporate Council for Dimensions of Dental Hygiene.