Validation. It's a word that I've used more and more since being unofficially, then officially, diagnosed with Ehlers-Danlos Sydrome, Fibromyalgia, and POTS (and a plethora of secondary illnesses that go hand-in-hand with both). It seems that even with that piece of paper from a doctor's office with a diagnosis in black and white, getting the type of validation needed from family, friends, other doctors, etc., becomes a Herculean task.
And why should I (and you) care about being validated? Those of us with chronic illnesses need the understanding of others (the so-called "Normals") around us to be properly physically and emotionally cared for and treated. EDSers especially--and others with rarer types of disorders--need the validation that their disorder is real, that their pain is real, and that others believe their disabilities. Otherwise, we are left with "it's all in your head" syndrome.
Thus, validation is important because, without it, no one can truly address our physical and emotional needs. We absolutely need the understanding of physicians in order to get to the root of physical symptoms and to flesh out treatment plans. However, we also need the validation of friends, family, and community to help and support us emotionally. The validation of those close to us helps to get past the frustration of when other Normals find it comforting(?) and/or helpful(?) to say things like, "no pain, no gain!" or "if you'd just get out of the house more you'd feel much better" or "have you tried [fill in the blank] vitamin?". Even when we are coping with illness well, and have come to terms with EDS and the emotions involved, one comment or look can send us reeling back to when we were first sick and dealing all the initial skepticism.
Finding validation from all sources is a difficult and never-ending road. It is, of course, crucial that EDSers find the validation they need from the important sources--mainly the physicians who are in charge of your treatment plan. Having validation from close family and good friends is important; however, you must remind yourself that not everyone is willing to listen and believe. You may never find validation from certain individuals. And that is OK. Remember that the way they respond to you is indicative of something wrong with them--not something wrong with you. And remember that the entire EDS community believes and supports you!
And why should I (and you) care about being validated? Those of us with chronic illnesses need the understanding of others (the so-called "Normals") around us to be properly physically and emotionally cared for and treated. EDSers especially--and others with rarer types of disorders--need the validation that their disorder is real, that their pain is real, and that others believe their disabilities. Otherwise, we are left with "it's all in your head" syndrome.
Thus, validation is important because, without it, no one can truly address our physical and emotional needs. We absolutely need the understanding of physicians in order to get to the root of physical symptoms and to flesh out treatment plans. However, we also need the validation of friends, family, and community to help and support us emotionally. The validation of those close to us helps to get past the frustration of when other Normals find it comforting(?) and/or helpful(?) to say things like, "no pain, no gain!" or "if you'd just get out of the house more you'd feel much better" or "have you tried [fill in the blank] vitamin?". Even when we are coping with illness well, and have come to terms with EDS and the emotions involved, one comment or look can send us reeling back to when we were first sick and dealing all the initial skepticism.
Finding validation from all sources is a difficult and never-ending road. It is, of course, crucial that EDSers find the validation they need from the important sources--mainly the physicians who are in charge of your treatment plan. Having validation from close family and good friends is important; however, you must remind yourself that not everyone is willing to listen and believe. You may never find validation from certain individuals. And that is OK. Remember that the way they respond to you is indicative of something wrong with them--not something wrong with you. And remember that the entire EDS community believes and supports you!
RSS Feed