Chronic Fatigue: When No One Believes Youby Gabe Howard Patient Advocate
People living with chronic fatigue syndrome (CFS) face multiple challenges. CFS is characterized by an excessive need for sleep that can't be explained by any underlying medical condition. While the need for sleep may increase with physical or mental activity, resting won’t improve how the person feels. No matter how much sleep people suffering from CFS might get, they still feel tired.
As if the disorder itself wasn’t bad enough, understanding CFS and finding effective treatments are even more difficult than the average person realizes, especially when you consider that only a person suffering from this complicated disorder would be in a position to need to manage it.
Chronic fatigue syndrome and the elephant in the room
Aside from all the challenges and symptoms of chronic fatigue syndrome, there is another, usually unacknowledged elephant in the room. Many people with CFS find that their friends and family don’t believe them, or loved ones feel that laziness is a factor or that the person with CFS just needs to be more active. This is compounded by the fact that there's no single test to confirm a diagnosis of chronic fatigue syndrome.
Fatigue in general causes a loss of concentration and cognitive functioning, so when a person is met with this kind of criticism from loved ones, it becomes difficult to mount a defense. Even assuming that the pushback is well-intended, it’s often coming from someone who is not sick and is expressing his or her opinion — that you don’t need sleep, or that you just need "to snap out of it" — as fact.
Americans don’t respect the need for sleep, and that sort of attitude from people close to us can leave a person not only still severely fatigued, but feeling judged and stigmatized, as well. Worse yet, a person suffering from CFS may believe the misinformation and agree with loved ones that he or she is, in fact, just "lazy."
Helping loved ones understand chronic fatigue syndrome
While the exact cause of chronic fatigue syndrome is unknown, there are still visible signs that you can point out to friends and family. First, show them that you are taking this seriously by being under the care of a medical professional. A diagnosis from a doctor will go a long way toward convincing the people around you that you're not imagining your condition. While at the doctor’s office, ask for a pamphlet to show to those who may doubt the seriousness of your disorder.
Second, document your symptoms. Keeping a log of how often you feel fatigued, the amount of sleep you’re getting, and rating the quality of your sleep will create a verifiable record that you can use to show the people around you what you are dealing with on a daily basis. This sort of accounting is also helpful for the doctor treating you.
Third, find a champion. Enlist someone close to you and get them on your side. Take them to the doctor with you and ask the doctor to explain CFS to them. They will be a much better advocate for you than you might be for yourself, because they won’t be suffering the effects of exhaustion.
While it might seem unfair that loved ones will believe a doctor's word over yours, if their newfound belief in your condition gives you the space you need to get well, consider it a positive tradeoff.