Myasthenia gravis (MG) is a chronic autoimmune disease. According to reports, it affects about 20 individuals per 100,000, yet many suffer for years without a diagnosis. How many undiagnosed myasthenia gravis patients are out there? What role does medical gaslighting play in this?
HOW MYASTHENIA GRAVIS WORKS
In “normal” bodies, healthy antibodies help attack foreign substances such as bacteria and viruses that the body detects in the blood. In those who live with MG, antibodies malfunction and destroy the communication between the nerves and muscles.This can lead to come-and-go weakness of the voluntary skeletal muscles.
It’s rarity plus each patients’ presentation of symptoms make it extremely difficult to diagnose. It presents so differntly that it’s even called the “snowflake disease”. But even after a diagnosis, finding treatments that control symptoms can be a lengthy trial and error process.
LIVING WITH MYASTHENIA GRAVIS
There is no cure for Myasthenia gravis. The extreme of treatment is thymectomy (removal of the thymus gland), but only limited patients qualify for this surgery. There is the risk of an MG crisis when the respiratory muscles stop working correctly after surgery.
Many continue their lives with constant come-and-go symptoms, whether the gap between weakness is a few minutes or years. They have no freedom to plan, schedule, or structure their lives because they are at the mercy of their symptoms. Living with MG can be highly frustrating, limiting and can quickly decrease the quality of life if not appropriately accommodated.
Modifying one’s life for Myasthenia gravis is not a solo task. It requires diverse support sources and a multi-aspect team of medical professionals for the rest of one’s life. However, financial security, access to resources, and a reliable medical team are not a reality for most MG patients.
Even those in remission often have to remain on treatments, and these come with side effects. Patients often describe side effects as worse and more debilitating than MG symptoms themselves, both short and long-term. Not everyone’s body reacts well to decrease dosages of medication. Therefore many are at risk of long-term side effects from these treatments.
OBSTACLES: COST, INSURANCE, AND GASLIGHTING
Treatments are expensive, and insurances frequently aren’t cooperative. MG patients have the stress and draining task of juggling regular appointments and tests around their everyday schedules. Then there is the addition of the emergency crises that can put people out of operation for years.
The quality of one’s life is already difficult to maintain once MG symptoms appear. Worse still, almost all MG patients have, at some point in their journey, experienced medical gaslighting.
Medical gaslighting happens when a health care professional downplays or dismisses what a patient is telling them. This can manipulate the patient into thinking they are exaggerating their own symptoms, or, imagining them all together.
Medical gaslighting is a global health predicament. In MG, a medical professional may determine a patient’s symptoms to be self-imagined, irrational. This can delay or prevent accurate diagnosis resulting in undiagnosed Myasthenia Gravis.
DANGERS OF GASLIGHTING
The considerable variation of MG symptoms, poor understanding of its causes, and its rarity make the perfect circumstance for medical gaslighting to occur. Gaslighting symptoms can be fatal.
Gaslighting results in a delays in diagnosis. A deadly crisis could occur while undiagnosed Myasthenia Gravis remains untreated. Even after diagnosis, it can delay treatment leading to the same result.
Gaslighting is often linked to various forms of discrimination. Since MG is most commonly diagnosed in young women (20s) but older men (60s), it presents as ageism and sexism. Additionally, MG providers will dismiss an MG patients’ pain because it is not accepted as a characteristic symptom. Rather than addressing a patient’s stated symptoms, providers will often refer them out to others.
acceptance, screening and advocacy
Health professionals must be aware of MG symptoms, not dismiss them. Patients need to be tested for MG if they have ever presented even one characteristic symptom. MG patients are left having to advocate for ourselves continuously. It is exhausting.
If you know someone living with MG-like symptoms who is yet to be diagnosed, stand up and advocate for them.
MG IN MY LIFE
Despite all the uncertainty that comes with having Myasthenia gravis, I am incredibly grateful that MG has entered my life. Every day is difficult. But MG sent me on a more gratifying and eye-opening path than anything I had imagined before this disease. I’m sure not all patients think like that, but I think they would agree that it has brought them new perspectives. Hopefully those perspectives help them view life with a new admiration that they didn’t have before.
A recent graduate of the University of South Florida, Tampa, Jodi Enders is an anthropologist. She specializes in rare disease, disability, and chronic and invisible illness advocacy. Jodi brings awareness to a global audience via her Instagram account @jodienders and her columns at MyastheniaGravisNews.com. Additionally, Jodi is passionate about freediving in Florida springs with manatees. She enjoys painting, photography, editorial-styled content creation, electroforming jewelry, and exploring the unseen parts of the world.
Drea Carbone’s article about the strength of Myasthenia Gravis advocacy