To discover you have something rare, incurable and genetic, then to find your pain won't be believed and cannot be measured by any test- in fact your blood tests are normal, but there is nothing normal about your pain or symptoms that turn out to be comorbidities. You are told "its all in your head," "maybe you should think about coping" and no specialist will see you. You attend a support group, study everything else it could be and discover that what you have is multi-systemic. Compound the aggravating process for disability, the $7 you have left after you pay for your meds, an inability to do any kind of work you were once qualified for, rent and bills looming; no wonder you are grieving your life, unnaturally anxious and in pain- constant unending pain. After waking one day with no feelings in your arms and a burning rod of hell you call a spine, your pain has increased immeasuably AND you have a high pain tolerance! Now remember this is rare so not only will very few doctors know it, few will know how to diagnose let alone treat. Remember crying makes you a hysterical female, eat right (but you cant afford it) and Always Educate EVERYONE. #aintnobodygotenoughspoonsforthat #EhlersDanlosSyndrome #CCI #PosturalOrthostaticTachycardiaSyndrome #ChiariMalformation #RaynaudsPhenomenon #ChronicPain #Anxiety #JointHypermobilitySyndrome #MedicalZebra #Spoonies #EDSAwareness