By: Dominique Boyette
I am tired.
It is not just “I missed a few good nights of sleep or had a row of long days at work” tired; but I am mentally and physically exhausted and I’m not sure how the shell of myself is waking up every morning and making it another day. No amount of sleep, food, water, or supplements has managed to restore my complete depletion of energy.
This feeling is not uncommon, but it is commonly written off as another bad feeling we will eventually have to get over. One of the many explanations for this overwhelming feeling is Chronic Fatigue Syndrome.
Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. Many people are living with Chronic Fatigue Syndrome don’t even realize their body has become seized by this disorder. According to an Institute of Medicine (IOM) report, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS, 90% of which are undiagnosed.”cdc.gov
You may ask what does it feel like? Or how can you really discern from an appropriate amount of fatigue vs. an ongoing underlying issue?
It’s not easy, the symptoms of ME/CFS can come and go or a person may have these symptoms all of the time. Symptoms of ME/CFS vary widely from person to person and may be serious or mild. Most symptoms are invisible to others, which can make it hard for friends, family members, and the public to understand the challenges a person with ME/CFS faces. If you think you may have ME/CFS, talk to your doctor. Womenshealth.gov At first, one may feel like she has the flu.
The main symptoms include:
Less-common symptoms of ME/CFS include:
Listen to your body. Even when you feel it’s hopeless or no one is listening.
It has taken me almost two years of chasing doctors and repeating myself to finally have someone casually say “oh yeah you have an autoimmune disease”, and all the things I was feeling were not normal or even something I could fix on my own. It is important to continue to advocate for yourself and your health. Navigating a health care system that constantly pushes us to the side while trying to hold yourself & life together is a burden. But it doesn’t have to be one you carry alone.
What causes Chronic Fatigue Syndrome?
The root cause is still unknown, but researchers speculate that contributing factors may include:
viruses, a weakened immune system, stress, or hormonal imbalances. healthline.com
“Social status and adversity were also major risk factors along with cultural and ethnic background. The incidence of CFS was highest amongst people who had the most difficulties with housing, finances, or had family problems, but this was balanced by levels of support within the community. Perceived cultural discrimination and insults in the workplace, or in society, along with racial and religious discrimination, were also much higher for CFS sufferers. Overall people with Pakistani, Indian or Black Caribbean backgrounds had a greater risk of CFS than the white population.” medicalxpress.com
Chronic Fatigue Syndrome is exacerbated by stress. Stress is often a root in many ailments that persist in BIPOC communities. It is a condition many of us are too used to living under, and tend to miss when it truly starts to overwhelm our lives. It is important to note how linked diseases are to each other and understand how one can often be a symptom for another. “Ruling out other potential causes of your fatigue is a key part of the diagnosis process. Some conditions with symptoms that resemble those of CFS include:
How is CFS treated?
Despite increased research efforts, CFS remains a complex condition with no exact known cause and cure. The recovery rate is only 5%. (Trusted Source) Managing CFS can therefore be challenging.
You’ll likely need to make lifestyle changes to adapt to your chronic fatigue. As a result, you may experience depression, anxiety, or social isolation. You might find that joining a support group can be helpful as you’re making decisions and transitions.
It has been a frustrating journey, but knowing that what I'm feeling stems deeper than my daily behaviors has been affirming. I've become more active in my research in the care I want for myself. I question doctors and don't allow myself to walk away intimidated or confused. It has also been helpful seeking other opinions and forms of healthcare, particularly Traditional Chinese Medicine. I have found holistic approaches to health make me feel more heard and provide remedies more suited to my life.
Health advocacy is a practice I've learned being apart of Urban Health Group. To know there are supports out here that want us to succeed help drive me to find the solutions I need to find the healing I want.
Here's to a new start and planning well for care.
Urban Health Group (UHG) is a virtual, boutique-style, concierge for healthcare navigation and mental health support.
We empower Black, Indigenous, People of Color (B.I.P.O.C.) to have the understanding and tools to make confident decisions in establishing a solid plan to navigate medical emergencies, and gain peace of mind for yourself and your loved ones.
We reduce stress and provide guidance in making informed choices for the care you deserve.
We facilitate a safe, comfortable, confidential , and relaxed environment to address your healthcare and mental health needs.