When You Interact With a Person With Chronic Fatigue, Please Understand This

With a hemoglobin of 9.4 that has likely continued to drop, I’m experiencing chronic fatigue due to iron deficiency anemia. Without enough iron, the body is unable to
produce enough hemoglobin, which creates red blood cells to carry oxygen
throughout the body. Symptoms of anemia include weakness, fatigue and difficulty concentrating and headaches.

I’m basically running on an empty tank. It doesn’t matter how much I sleep or rest, I’m constantly drained of my energy. Moments of rest or sleep are only temporary fixes that quickly lose their power within minutes. I continue to function with the best of my ability, and at times it’s all I can do to remain awake. My daily life suffers, my job suffers and I suffer. And yet, unless you’ve experienced chronic fatigue, it’s hard to imagine what it is like for that person.

Even when others are aware of anemia or other conditions causing chronic fatigue, it’s hard to fathom the depth of fatigue one experiences. I’m regularly asked if I feel any better than I felt the previous day, as though a night’s rest will make the difference in my hemoglobin or fatigue. I appreciate the thoughtfulness and care of friends and family, but unfortunately, a good night’s sleep isn’t going to do the trick with the chronic fatigue caused by my anemia.

Every day is a struggle. I awake from a restful night’s sleep, only to feel drained again within 30 minutes, begging for a nap. I must force myself to stay through the workday without leaving early just to sleep. If I sit too long, I’m overcome with tiredness. My eyelids become heavy, begging to close for a few moments of rest and hopeful sleep. All I think about is how much I want and need to sleep.

My activities are limited and my social life is virtually nonexistent. I just don’t have the energy for talking, visiting or participating in social activities, especially if they are later in the day. I want to spend time with friends and family, but the mere actions of responding to an email or reading a letter taxes my energy. Every task becomes an “I will do it later” action as I attempt to preserve my energy like a precious liquid that is evaporating before my eyes. Even thinking has become a chore as it becomes more and more difficult to think clearly and to focus on what is being said or done at the moment.

When interacting with those of us with chronic fatigue, please understand we aren’t going to feel better after getting much needed rest. The fatigue stays with us; it’s a constant companion until we’re able to resolve the underlying cause of the fatigue. And unfortunately, not all of us will be able to resolve the underlying cause. We apologize if it takes us longer to respond or to socialize; we’re simply in survival mode at this point. We’re pushing forward the best we can with the least amount of interference possible.

Follow this journey on Life’s a Polyp.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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