What Chronic Fatigue Feels Like

Chronic Fatigue: When the 17-Hour Nap is Not Enough
Chronic Fatigue: When the 17-Hour Nap is Not Enough

What is chronic fatigue? My mom asked me this weekend what it feels like, and I had a hard time putting it into words. Years ago, when I was diagnosed with bipolar disorder at the age of 18, I was able to describe bipolar disorder. A friend’s suicide was the catalyst for my diagnosis—while my mom never fought depression, she knew how dangerous bipolar disorder could be. Sometimes, depression is a lonely feeling even when you’re surrounded by people you love. Sometimes, it feels like the walls are closing in or I’m drowning. Physical pain is a little easier to describe. When people would ask me what polycystic ovarian syndrome (PCOS) was, I told them it felt like a thousand freshly sharpened pencils were piercing my ovaries. At the time, I did not carry a cane—that would happen years later when I was diagnosed with Myasthenia Gravis so my pain was invisible. With invisible diseases, there are misunderstandings (“10 Things NOT To Say To a Depressed Person”) and discrimination.

Suffering Can’t Be Quantified

But sometimes even when a person has never met someone with bipolar disorder or Myasthenia Gravis, I am still able to communicate what I’m going through. I have bipolar 2; in my case, I struggle more with depression than hypomania (literally translated as “mania-lite”). This may not be true of everyone with bipolar 2. Often, people have some point of reference for depression. Everyone has been laid off, faced a breakup, or lost someone they love. My friend, “B”, lost his brother in a motorcycle accident. He me once told me that suffering cannot be quantified. B said that losing a sibling is a tragedy and a breakup is a tragedy for some. When I tell people I’ve been depressed lately, they ask, “Why were you depressed? What happened?” Sometimes, there is a trigger (like excruciating physical pain or work stress) and sometimes I say, “It just happened. You can be depressed even when nothing ‘bad’ happens. Chemical imbalances exist.” Then, they say, “I kind of get it” because they experienced depression once. This is followed by an empathetic statement like, “I’m sorry you have to go through this.”

A Point of Reference

Some people have a reference for pain even if they’ve never had an illness. I once met a nice man at an alumni event. He saw my cane and asked me what happened. I told him. Then, he told me about an accident he had as a teenager—a vending machine fell on him! He was bedridden for a year and his left leg was amputated. He now has a prosthetic leg. I told him that I too was bedridden for a year because of Myasthenia. We compared notes (and even laughed) about our shared experience. While his pain had an ending and mine does not, there was a bond. A friend of mine who lost her brother, sister, and mother to Huntington’s was asked once what that disease felt like.

She answered, “Imagine the worst you’ve ever felt in your life—food poisoning, the flu, whatever. Now, multiply that by a hundred and do it everyday for the rest of your life. That’s what it feels like.”

Fatigue: An Invisible Monster

Yes, there are some people who will never “get” mental or physical pain. We can lose friends. Still, I find it harder to explain fatigue even when I’m talking to someone empathetic. Chronic fatigue is more than being “tired.” Sometimes, I wake up feeling exhausted. Some days, like today, I wake up with energy and then inexplicably, I lose that energy and crash. Fatigue happens even when I’m happy. Fatigue is the neighbor who drops by unannounced. Sick people’s inability to work or need to postpone appointments is often perceived as laziness or selfishness. It can be lonely.

Examples of Fatigue:

  • Having to choose between getting out of your pajamas or exercising
  • Feeling exhausted after a 17-hour nap
  • Trying to get out of bed to brush your teeth: Languishing there for hours until you get the energy. (And in that time, taking six different Which Saved By the Bell Character Are You quizzes! Five said I was Kelly Kapowski but one said I was Mr. Belding.)
  • Binge-watching television shows, including shows you hate
  • Choosing between eating or sleeping
  • Struggling to get to the bathroom: Even holding it in until you get the energy
  • Forgoing hobbies you used to enjoy

Has fatigue affected you?

–Your Stylist, Jessica Gimeno

JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

One thought on “What Chronic Fatigue Feels Like

  • September 12, 2015 at 4:29 am
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    im 59 y/o; i was diagnosed with myasthenia gravis sept 2013; had thymectomy apr 2014; still had the symptoms of diplopia (double vision) and occasional fatigue. im still on my maintenance medicine (mestinon). i have an amazing family love and support, particularly my 3 daughters, who are always by my side.

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