I recently reviewed a disability insurance denial to try to help a patient develop a strategy for how to proceed to try to get her disability. Under her disability insurance policy, she was disabled if she was unable to perform the functions of the job she was in at the time she became disabled (called “own occupation”). The patient was a researcher, a high level engineer who worked on federal contracts for military and defense. Although her job was sedentary, it required great cognitive skill, alertness, intellectual ability.
The denial letter correctly recited her physical symptoms, which were moderate in severity. She could manage sedentary work, then, according to the insurer. Thus, she was not disabled.
What the insurer missed – and what most people who have not had a chronic illness don’t really understand – is the fatigue that comes along with chronic illness. It is not sleepiness, although we may also be sleepy. But this is bone tired.
In my book, I called it Friday Tired because it’s a fatigue that feels like every day is Friday. I could sleep for weeks and still be fatigued. We only call it “tired” because we don’t have another word. So I made up a phrase: Chronic Illness Fatigue.
It doesn’t get better with a nap. Or a vacation. Or even necessarily a reduction in other symptoms. It’s a symptom in and of itself. I’ve read articles that refer to fatigue as a comorbidity – a second illness of its own, secondary to the primary chronic illness. I’m not talking about chronic fatigue syndrome, which is itself a primary illness. I’m talking about fatigue that comes with Crohn’s disease or multiple sclerosis or rheumatoid arthritis - Chronic Illness Fatigue.
Chronic Illness Fatigue certainly affected this patient’s ability to do her job. She is so exhausted that tasks take her far longer than she used to. She may be in mid-sentence and lose her words or her train of thought. She makes mistakes. No way would she be able to perform the intensely intellectually demanding job she had when she became disabled.
But how do we prove that we have Chronic Illness Fatigue? It’s totally subjective. I tell my doctor I’m tired and he tells me to get some rest. Even he doesn’t get that it has nothing to do with rest -- unless I’m going to stop working and rest all the time, which probably would feel like a relief, but I still would never get less tired or more energetic.
If the medical profession is going to learn to do a better job treating and controlling chronic illness, it needs to focus on Chronic Illness Fatigue. It needs to understand that it exists, and it needs to document it in specific cases so when a patient applies for disability, it won’t be just her word against the world’s. Chronic Illness Fatigue should be recognized as a comorbidity of most chronic illnesses. And it must be understood and documented and even treated.