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I recently asked the question \u201cHow do people without MS react to you?\u201d to an MS discussion group I belong to.\u00a0 Their responses?\u00a0 The same I have been hearing for decades:\u00a0 We feel misunderstood, ignored, and forgotten by so many people.<\/p>\n
Why do we feel this way?\u00a0<\/em><\/p>\n First, on the outside so many of us look good unless we have some kind of walking aid to indicate otherwise.\u00a0 We\u2019re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses.\u00a0 When we look good, people automatically assume that we are good.\u00a0 I\u2019m in a wheelchair, but I still look good and completely normal.\u00a0 If I would use a store\u2019s scooter instead of my own, I would get dirty looks.\u00a0 I\u2019m misunderstood.<\/p>\n But very often we are not good because so many of the symptoms are invisible.\u00a0 Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination\u2014the list is endless.\u00a0 These symptoms interfere with everything we think, say or do.\u00a0 They are annoying; they hurt; they are frustrating; and they make us crabby. For persons with MS that do or do not show visible impairment or walking aids, these symptoms are very disabling.<\/p>\n Invisible symptoms are difficult to describe, and when we tell someone about them it\u2019s hard for them to understand or empathize.\u00a0\u00a0 Sometimes we use examples like \u201cWhen I walk, it feels like I have a ten-pound weight on my ankle\u201d, \u201cIt\u2019s like when your arm falls asleep but never wakes up\u201d or \u201cMy hands look normal, but I can\u2019t button buttons.\u201d<\/p>\n When we see these same people again, they forget that we have these symptoms because they are invisible.\u00a0 If we talk about them, we sound like complainers.\u00a0 Unless we complain about these things often, who would know we have these problems or that they continue to plague us?\u00a0 And who wants a complainer around all the time?<\/p>\n Fatigue is the hallmark symptom of MS.\u00a0 It is a universal complaint by over 90% of MS victims.\u00a0 It doesn\u2019t matter if the case is mild or advanced.\u00a0 It doesn\u2019t matter if one had a good night sleep or if the MS is not currently active. Fatigue is always present with MS, 24\/7.\u00a0 Why?\u00a0 Fatigue exists because MS is a disease, a chronic illness, that causes other symptoms such is walking problems to intensify.\u00a0 Constant fatigue leads to our moodiness or depression.\u00a0 So when somebody suggests we need to get out and take our mind off things, they truly don\u2019t understand why a sofa or bed is more desirable to us.<\/p>\n People without MS are often uncomfortable around us because they don\u2019t know what to say or do.\u00a0 Or because of our moods or a previous bad experience, they are unsure what kind of a response they will receive.\u00a0 Others just can\u2019t deal with it perhaps because of personal feelings like guilt. Therefore, it is often easier for them to just ignore it.<\/p>\n So, what can we do about it?<\/em><\/p>\n We need to be educators, communicators and advocates to everybody, everywhere\u2014beginning with the basic question and a simplified, clear answer.\u00a0 Forget the boring textbook medical details.\u00a0 Something like this:<\/p>\n What is MS?<\/em><\/strong><\/p>\n Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves.\u00a0 That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive\/emotional functions.<\/p>\n It is not fatal, contagious, or congenital.\u00a0 There is no cure; the cause is unknown. It is generally progressive.\u00a0 That means that because there is no cure, the majority of persons afflicted (2.5+ million worldwide) will become disabled during the decades of their lifetime with no way to fix the damage.\u00a0 Current estimates are that 20-25% will end up in a wheelchair.<\/p>\n From the day those of us received our diagnosis, we have no idea what course our disease will take.\u00a0 What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? MS is unpredictable and uncontrollable; the losses continue and the grieving process never ends.<\/p>\n There are treatments available that slow disease progression, and meds to help with relieving symptoms and shortening relapses.\u00a0 But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects.\u00a0 However, there are many\u00a0things one can do to manage it effectively.<\/p>\n Peer-to-peer, we understand it, share our stories and how we cope with MS. We count on our peers, close family\/friends and MS organizations for knowledge and support to help us manage it during our lifetime.<\/p>\n But we would like more.\u00a0 We want everyone to know and understand what MS is about, not just be aware of MS being something that people walk for or bike for.\u00a0 The more people that UNDERSTAND multiple sclerosis, the less we with MS feel we\u2019ll be misunderstood, ignored, and forgotten.<\/p>\n Let\u2019s all get started now:\u00a0 hand, send or post this article to everyone you know.\u00a0 Do it today!<\/p>\n www.debbiems.com<\/a><\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" April 30, 2012 \u201cThe Misunderstood, Ignored, and Forgotten Disease\u201d I recently asked the question \u201cHow do people without MS react to you?\u201d to an MS discussion group I belong to.\u00a0 Their responses?\u00a0 The same I have been hearing for decades:\u00a0 … Continue reading