Understanding and supporting invisible disabilities, including Lyme disease

Lonnie Marcum

OCT 24, 2024

Invisible disabilities are physical, mental, or neurological conditions that are not immediately apparent to others. Despite being “invisible,” these conditions can significantly impact a person’s life and require special accommodations and ongoing support.

Unlike conditions that other people can see, such as those requiring the use of a wheelchair, invisible disabilities often go unnoticed, leading to misconceptions about a person’s needs.

Examples of common invisible disabilities

• Dysautonomia, also known as autonomic dysfunction, refers to a condition in which the autonomic nervous system (ANS) does not function properly. The ANS controls many crucial bodily functions, such as heart rate, blood pressure, digestion, temperature regulation, and respiratory rate. When the ANS is impaired, these processes can become dysregulated, leading to a wide range of symptoms.
• Post-exertional malaise (PEM) where even minor physical or mental exertion can result in severe symptom exacerbation, often lasting days or weeks.
• Chronic fatigue syndrome (CFS): Fatigue lasting six months or more, and PEM
• POTS (Postural Orthostatic Tachycardia Syndrome) is a condition characterized by a significant increase in heart rate when a person stands up from a lying down position. It is a form of dysautonomia. People with POTS experience an abnormal response when they move to an upright position, leading to symptoms that can be disabling.
• Myalgic Encephalomyelitis (ME): Causes widespread neuro-immune related symptoms including: neuroinflammation, immune dysfunction, muscle pain, headaches, cognitive dysfunction (often described as “brain fog”), dysautonomia, PEM, CFS and POTS.

Patients with Lyme and tick-borne disease are often left with persistent symptoms following treatment. In MyLymeData, now with over 18,000 participants, the three most frequently reported worst symptoms include neurological-associated symptoms (84%), fatigue (62%), and musculoskeletal-associated symptoms (57%).

POTS is the most common manifestation of dysautonomia reported to occur in patients with persistent symptoms of Lyme disease.

Infection-associated chronic conditions

For years, ILADS conferences have been the only place I heard clinicians and researchers expressing an understanding and a desire to help patients with complex, infection-associated chronic conditions (IACC).

In 2021, I reviewed a paper entitled “Recent Progress in Lyme Disease and Remaining Challenges,” co-authored by 31 researchers from 19 separate institutions. That paper felt like a real tipping point to me.

Last week, I watched the final meeting of the CDC/HHS funded “Infection-Associated Chronic Conditions – Understanding and Engagement” (ICUE) project. During that meeting, LymeDisease.org’s Lorraine Johnson, represented and gave voice to the millions of patients living with chronic symptoms following infection with Lyme and/or other tick-borne diseases. (Read her summary of that meeting here)

With all the new collaborations coming out of the National Academies of Science, Engineering and Medicine (NASEM) workshop on “Lyme infection-associated chronic illness or “Lyme IACC,”  I have high hopes for continued progress—not just for patients with chronic Lyme and co-infections, but so many other marginalized illnesses like long-COVID, ME/CFS, and dysautonomia.

Last year, I wrote about the real symptoms suffered by patients with invisible illness.Recently I offered suggestions on how patients can track those symptoms and share them with their doctors  to aid in better diagnosis and treatment.

For everyone out there suffering from an invisible illness: I just want to say that I see you, I hear you, and I believe you.

LymeSci is written by Lonnie Marcum, a physical therapist and mother of a daughter with Lyme. She served two terms on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org.

Melinda

Reference:

https://www.lymedisease.org/invisible-disabilities-lyme-disease/