Why is Ehlers-Danlos syndrome called invisible disorder?

Ehlers-Danlos syndrome (EDS) is considered an invisible disorder. An invisible disorder is a chronic illness that can affect a person’s daily life, but might not be obvious to people unfamiliar with the disorder. EDS can significantly affect the day-to-day activities of a person. Chronic pain and fatigue are very common. However, to an onlooker people with EDS appear healthy. Elastic skin and loose joints are not obvious to most people. Even after explaining EDS to someone that person may state, "But you don’t look sick." People with EDS are encouraged to contact others with the disorder to talk about how to best handle these situations and how to best share with people that they have a chronic illness. Support groups, including the Ehlers-Danlos Society, are trying to increase awareness of the disorder so EDS is less of an invisible disorder. These groups also provide advice on how to deal with living with an invisible illness.

Other Questions About Ehlers-Danlos syndrome, Classic type (type I)

• Will I have all of the symptoms of Ehlers-Danlos syndrome?
• Why is Ehlers-Danlos syndrome called invisible disorder?
• Who else in my family should I test for Ehlers-Danlos syndrome?
• Where do I find other people with Ehlers-Danlos syndrome?
• Where can I get financial help for Ehlers-Danlos syndrome?