The Silent Struggle: Chronic Fatigue in Women

Nyala lays in bed exhausted after walking up the stairs to brush her teeth and attempting to make breakfast. She becomes overwhelmed thinking of her tasks for the day, which includes laundry and working for 8 hours. Nyala cannot make it out of bed and decides to request working from home. Her employer denies her request and Nyala goes back to bed.

In a world consumed by noise, work and busyness, there exists a silent struggle that has existed for decades and Nyala’s day reflects aspects of it. This struggle is chronic fatigue.We are all exhausted from time to time, though to varying extents. What many aren’t aware of is Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. ME/CFS is defined as “a complex multisystem illness characterized by activity limiting fatigue, worsening of symptoms after activity and other symptoms.”^[3] ME/CFS affects millions of people worldwide, specifically around 836,000 and 2.5 million people in the U.S. are affected alone.^[2] Women are more likely than men to have ME/CFS as well as have more symptoms than men do.^[4] Black and Latinx Women are disproportionately affected.^[2]

Obtaining a diagnosis of CFS is not easy for women. This is significantly related to the lack of medical education in medical schools as well as social beliefs that women are over dramatic. Many people, especially women, are diagnosed after years of multiple doctors visits, seeing multiple providers, misdiagnoses, etc.^[2] CFS is often misdiagnosed as depression.^[1] The exact cause of ME/CFS is unknown. However, there are currently studies being done to identify possible causes such as infections, immune system changes, stress, etc.^[3] It is important to note that there are other conditions that recognize chronic fatigue as a symptom. Some of these conditions are Fibromyalgia, Hypothyroidism, Hashimotos Disease, Digestive Issues, and Iron Deficiency Anemia. Multiple are also active co-occuring conditions.^[4]

Nyala possessed some of the symptoms of ME/CFS. She had a lowered ability to complete activities such as making breakfast and running errands. Major symptoms include post-exertional malaise, unrefreshing sleep, and cognitive dysfunction. Pain is also a common symptom.^[6] Cognitive dysfunction makes it a struggle for women to get through their daily activities. Confusion, difficulty retrieving words and overall, brain fog impacts work performance, completing to-do lists, socializing and more. Trouble falling asleep and staying asleep poses a major struggle. We all know how important it is to get good quality sleep. It is imperative for us to function well. Muscle weakness, headaches and digestive issues are among other symptoms. Though there is no cure or one treatment option for ME/CFS, some of these symptoms can be managed. General therapies such as low intensity exercise, Vitamin B12 injections, and increasing energy by taking appropriate medications have been used to manage symptoms.^[7]

ME/CFS certainly impacts all aspects of daily life. This syndrome poses social, educational, personal and occupational consequences. Around a third of ME/CFS patients also suffer from depression and anxiety disorder.^[7] Treating anxiety and depression can be helpful with managing ME/CFS. The importance of self care and pacing should not be underestimated. Pacing yourself can prevent post-exertional malaise or the effects of it. “Post-exertional malaise (PEM) refers to a worsening of ME/CFS symptoms and/or the appearance of new symptoms after physical or cognitive exertion which was previously tolerated and is often delayed 24-72 hours or more.^[8] PEM is considered to be the hallmark symptom of ME/CFS and interferes with the ability to lead a “normal” life.”^[8]

CFS is a silent struggle that is affecting millions and it will not go away. Affectedness ranges from mild to very severe. We must keep in mind that Chronic Fatigue Syndrome often leads to disability. A study shows that “up to 75% of those affected are unable to work, and an estimated 25% are consistently housebound or bedbound.^[3] The level of severity can fluctuate, with 61% reporting being bed bound on their worst days.”^[3]

Chronic Fatigue in women should not be ignored. “Experts identified being a woman and having ME/CFS for more than 10 years are risk factors for severe illness. Symptoms increase in intensity as people age.”^[4] This struggle should be better recognized and cared for in healthcare settings as well as receive more funding for research. Women should no longer struggle in silence. Advocacy is imperative and this disease should no longer be deemed as a silent and debilitating struggle amongst women.

Feel free to visit https://www.meaction.net/about/ to learn more about ME/CFS and the people fighting for awareness as well as a world where people with ME/CFS are believed and supported by systems that work and have access to effective medical treatment.

References

[1] Vahratian, A., Lin, J. S., Bertolli, J., & Unger, E. R. (2023, December). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021-2022. NCHS Data Brief, (488), 1-8. PMID: 38085820.

[2] Griffith, J. P., & Zarrouf, F. A. (January 1, 8). A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume It’s Depression. National Center for Biotechnology Information. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2292451/#:~:text=Objective%3A%20Chronic%20fatigue%20syndrome%20(CFS,is%20often%20misdiagnosed%20as%20depression.

[3] Mayo Clinic. (2021, August 25). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Mayo Clinic Proceedings. Retrieved March 2, 2024, from https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

[4] National Institute for Health and Care Research. (2023, January 1). ME/CFS affects women more severely than men. Retrieved March 3, 2024, from https://www.nihr.ac.uk/news/mecfs-affects-women-more-severely-than-men/34277

[5] Centers for Disease Control and Prevention. (n.d.). Possible Causes. Retrieved from https://www.cdc.gov/me-cfs/about/possible-causes.html

[6] ME Action Network. (n.d.). People with ME. Retrieved from https://www.meaction.net/learn/people-with-me/?gad_source=1&gclid=Cj0KCQjw-r-vBhC-ARIsAGgUO2Bgw7IbN5fRVwcGrm8g8R-k_-VdbYUS8blp54BpXdWaVdKPn_klAzQaAlWJEALw_wcB

[7] ME/CFS Roadmap. (n.d.). Retrieved from https://mecfsroadmap.altervista.org/[8] MEpedia. (n.d.). Post-exertional Malaise. Retrieved from https://me-pedia.org/wiki/Post-exertional_malaise