People often ask me, of all the chronic illness I have, which one I would choose to get rid of if I could. Without hesitation, I blurt out myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS!

What is Myalgic Encephalomyelitis (ME/CFS)?

If you’ve ever wondered about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), you’re not alone. This complex and debilitating condition is often misunderstood, but it’s crucial to raise awareness about its profound effects. In this blog, I’ll share my personal journey with ME/CFS, highlighting the challenges and the hope I’ve found along the way.

Myalgic encephalomyelitis, commonly known as ME/CFS, is a chronic illness characterized by extreme fatigue that doesn’t improve with rest and can worsen with physical or mental activity. Many people mistakenly believe it’s just “chronic fatigue,” I cringe when I hear that phrase because the reality is far more severe. Symptoms can include cognitive difficulties, sleep disturbances, and post-exertional malaise (PEM), making everyday activities incredibly challenging.

The Misunderstanding of ME/CFS 

One of the biggest hurdles for those with ME/CFS is the widespread misunderstanding of the condition. When I mention my diagnosis, I often hear, “Oh yeah, I get tired too.” This dismissive attitude can be incredibly frustrating. It’s vital for people to understand that the exhaustion from ME/CFS is not the same as typical fatigue; it can be debilitating and isolating. ME/CFS isn’t just about fatigue. Other symptoms include:

Cognitive Impairment: 

• Difficulty concentrating, remembering, and making decisions.
• Brain fog or feeling “sluggish.”

Orthostatic Intolerance: 

• Dizziness, lightheadedness, or fainting when standing up or moving quickly.

Muscle Pain and Aches: Widespread muscle pain that may be tender to the touch and Joint pain. 

Sleep Disturbances: 

• Unrefreshing sleep, despite getting enough sleep.
• Frequent awakenings during the night.

Other Symptoms: 

Flu-like symptoms (e.g., fever, chills)

Headache

Sore throat

Sensitivity to light, noise, or chemicals

Gastrointestinal issues (e.g., nausea, bloating)

Most people with ME/CFS experience multiple symptoms which can affect the functionality of their everyday life.

My Personal Experience with ME/CFS

My journey with ME/CFS began in high school after a bout of mononucleosis. Despite numerous doctor visits, I struggled to find answers. One doctor told me I was just lazy. As you can imagine, I was crushed. However, in 2016, I finally received a formal diagnosis of ME. This diagnosis although validating, brought a harsh reality: there’s currently no cure for this illness. The lack of recognition from the medical community only added to the weight of my condition.

Daily Life: Navigating Good Days and Bad Days

Living with ME/CFS means managing a range of symptoms that can fluctuate daily. On good days, I may be able to engage in basic self-care or enjoy time with family on the patio, and spend time on social media, but even then, I can feel overwhelmed. On bad days, I may sleep until the afternoon, sometimes all day, struggling to meet even basic needs. The push-crash cycle—where pushing myself leads to intense crashes—can make life challenging.

The Toll of Medical Appointments

Medical appointments can be particularly exhausting. I recently attended a physical therapy session on a particularly hard day that felt unbearable, even with my husband driving. I wanted to cancel but knew there would be a late cancellation fee. The discomfort, pain and fatigue made it clear just how much ME/CFS impacts my daily life. After enduring the appointment and just wanting to crawl into bed, in retrospect I would have gladly paid the fee.

Cognitive Challenges and Isolation

Another significant aspect of ME/CFS is cognitive dysfunction, often referred to as “brain fog.” Conversations can become difficult as I struggle to find words and articulate my thoughts. It can be quite embarrassing as my mind can feel completely empty. This can lead to feelings of isolation, and sadly, the suicide rate among those with ME is alarmingly high. Raising awareness about the mental health aspects of this illness is essential.

The Hope for Increased Awareness and Research

With long COVID contributing to an increase in ME/CFS cases, there is hope for greater research and understanding of the condition. While there’s no cure yet, learning to pace myself and listen to my body has been invaluable. I also recommend resources like the Bateman Horne Center, which provides education for both patients and healthcare providers about ME/CFS.

Finding Gratitude Amidst the Challenges

Having lived with ME/CFS for over 30 years, I’ve learned to find gratitude in my support system and the connections I’ve built with others facing similar struggles. Those good days, give me hope for a better future.

You Are Not Alone

If you suspect you may have ME/CFS, please seek help. It took me far too long to get diagnosed, and you don’t have to suffer alone. There are numerous support groups, medications and resources available to help you navigate this illness. Sharing your experience can be incredibly validating and can foster understanding among your loved ones.

Embracing Resilience and Hope

My journey with ME/CFS has been filled with challenges, but it has also taught me resilience and empathy. By sharing our stories, we can raise awareness and encourage a deeper understanding of this complex condition. While the road is difficult, I believe that even in chronic illness, there can be silver linings. Together, we can embrace the rain and and enjoy the rainbow.

If you found this post helpful, please share it to raise awareness about ME/CFS. Your support can make a difference in the lives of those who are struggling with this condition.