I have written three previous posts about fatigue. One is an attempt to explain what chronic fatigue is like. The second is a checklist I use to get through days with especially low energy. Lastly, I wrote about how I communicate about my fatigue with doctors when they either don’t understand or don’t believe me.
Fatigue is one of the most poorly understood symptoms associated with chronic illness. It’s hard to communicate about, hard to live with, and it makes every part of being sick harder to do anything about. Because of this, it is extremely important for doctors to understand fatigue and understand how much their patients with fatigue need their help and support. Unfortunately, most of them don’t.
It is difficult to overstate the urgency for doctor education about fatigue. To underline this urgency, I have compiled some of the disservices patients with fatigue face, when our doctors just don’t understand what we are trying to tell them.
Impediments to Research, and Developing Diagnostic Tools and Treatment
Because each patient’s account of fatigue is often minimized, dismissed, or misattributed as a side effect of other medical problems, doctors couldn’t possibly know how widespread Chronic Fatigue Syndrome (CFS) is. Not recognizing cases of CFS means that doctors don’t have the chance to trade notes with colleagues about their successes and failures in helping us. This means missed opportunities for information sharing within the medical community. All of this leads to a lack of funding and medical research for chronic fatigue. This means that there are still very few options for diagnosing and treating fatigue.
Problems Getting Help, Accommodations, and Understanding
When doctors don’t recognize how debilitating fatigue is for us, they don’t lend legitimacy to our claims. This makes it even harder for us to be believed by those we need help from, including medical teams, employers, friends and family, disability insurance.
Clinical language to talk about our problems hasn’t been developed. This compounds our issues with communication and getting help. The imprecise language we do have available makes it easy to have our very real problems diminished. We commonly hear things like, “You’re just tired,” “Everyone gets fatigued sometimes,” and “What’s a spoonie, and how can I take your complaints seriously if you call them silly things like ‘spoonie problems’?”
Damage to Doctor/Patient Relationships
When doctors dismiss our complaints of fatigue, they are demonstrating a lack of compassion and faith in patient accounts. This damages the relationship we have with our providers. Since our outings are often just to medical appointments, our medical teams are our lifelines. This means that damage to this relationship is particularly damaging to us.
Disempowerment, Self Doubt and Isolation
When doctors don’t believe our complaints, it disempowers patients. We as patients often stop listening to their bodies, and bringing complaints to doctors. We become even more isolated than our fatigue already makes us.
The internet is giving some of us a chance to connect with others like us, to know we’re not alone, and to get a sense of the enormity of the problem. However, because we’re all suffering from fatigue, this ability to learn about ourselves and about our problems doesn’t usually translate into activism or transmission of information back into the medical community. I have hope, though, that we are slowly starting a movement as we find each other and share our stories.
The Professional Patient 
You are so right, it is utterly devastating. I hate the word ‘fatigue’ as it doesn’t come close to describing the reality of trying to live with severe chronic illness and yet it is unavoidable because the English language just doesn’t have another word for the extreme symptoms chronically ill patients live with every day. It is so frustrating when friends, family and doctors use words like ‘tired’ or ‘sleepy’ to describe symptoms so debilitating there are times I cannot function at all or liken their healthy tiredness from a busy active day to the effects of being profoundly ill.