{"id":819,"date":"2022-03-29T18:10:34","date_gmt":"2022-03-29T18:10:34","guid":{"rendered":"https:\/\/debbiepetrina.com\/?p=819"},"modified":"2022-03-30T16:01:33","modified_gmt":"2022-03-30T16:01:33","slug":"needed-better-ms-education-understanding","status":"publish","type":"post","link":"https:\/\/debbiepetrina.com\/?p=819","title":{"rendered":"MS Awareness: Are We Shooting Ourselves in the Foot?"},"content":{"rendered":"<p><strong>March 29, 2022<\/strong><img loading=\"lazy\" decoding=\"async\" class=\" wp-image-744 alignright\" src=\"https:\/\/debbiepetrina.com\/wp-content\/uploads\/2022\/02\/Orange-MS-Awareness-Ribbon-285x300.jpg\" alt=\"\" width=\"159\" height=\"167\" srcset=\"https:\/\/debbiepetrina.com\/wp-content\/uploads\/2022\/02\/Orange-MS-Awareness-Ribbon-285x300.jpg 285w, https:\/\/debbiepetrina.com\/wp-content\/uploads\/2022\/02\/Orange-MS-Awareness-Ribbon.jpg 498w\" sizes=\"auto, (max-width: 159px) 100vw, 159px\" \/><br \/>\n<strong>5th week, MS Awareness Month<\/strong><\/p>\n<p>I let my hair down last night.\u00a0 I posted a distressing message on social media.about MS Awareness Month.<\/p>\n<p>I have just reached my 42nd year of living with MS, and I was in one of my distressing moods.<\/p>\n<p>Throughout MS Awareness month, I guess I was irritated by the upbeat MS events, activities and stories I&#8217;ve been reading all month on numerous publications and MS platforms. I was tired of all the happy posts on social media, and wanted to express my real feelings at that time. It seems the same every year.<\/p>\n<p>I get it that people with MS need lifted and this is an appropriate time to do just that. But why does it stop there?<\/p>\n<p>Truth is, people need EDUCATED more about MS.\u00a0 It sucks. It&#8217;s hard. And I&#8217;m tired of.\u00a0 pretentious posts by people who glorify that that &#8220;MS&#8221; doesn&#8217;t define them. MSers are shown doing all kinds of wonderful things. &#8220;There are SO many treatments available now. Just pop a pill or get a shot.&#8221;\u00a0 Inspiring, yet defeating. Are we shooting ourselves in the foot?<\/p>\n<p>I want honestly. Realism.\u00a0 Why aren&#8217;t there more innovative ways to help people UNDERSTAND the complications and implications of MS.\u00a0 Display faces of distress and sadness instead of smiling ones. Why not show a list of things that cause financial impact&#8211;job loss; medications; bladder supplies;\u00a0 equipment&#8230; Or of our losses&#8211;income. freedom, independence, social life, household limitations&#8230;<\/p>\n<p>I was gratified that some online websites offered great MS education in March. <span style=\"color: #000000;\"><a href=\"https:\/\/mswellnessproject.com\/ms-awareness-fact-we-need-resources-to-live-better\/\">MS Wellness Projec<\/a>t has an excellent post about resources.<\/span>\u00a0The<a href=\"https:\/\/www.mscenter.org\/education\/publications\/informs\/184-informs-spring-2022\"> Rocky Mountain MS Center<\/a>\u00a0 <span style=\"color: #000000;\">has a free newsletter entitled <a style=\"color: #000000;\" href=\"https:\/\/www.mscenter.org\/education\/publications\/informs\/184-informs-spring-2022\">&#8220;Painting the Picture of MS: How can we help the People Around Us Better Understand Multiple Sclerosis?&#8221;<\/a><\/span><\/p>\n<p>There are one million people estimated in the U.S. (2.5 million worldwide) living with MS. However, when you count the people not living with it&#8211;friends, family, healthcare workers, employers, public service, strangers, etc.&#8211; the number dealing with MS is in the millions!\u00a0 <strong>Helping everyone to understand MS helps those of us living with it.<\/strong><\/p>\n<p>Today is another day. It&#8217;s education time, one of my passions in life. If everyone dealing with MS educates just one stranger with MS, it&#8217;s an impact. There are strength in numbers.<\/p>\n<p><strong>Although MS Awareness Month is over, educating others about MS doesn&#8217;t have to be,<\/strong><\/p>\n<p>What do you think?<\/p>\n<p><strong>Debbie Petrina<br \/>\n<em>Author of <a href=\"https:\/\/amzn.to\/3CyU3R2\">Managing MS<\/a><br \/>\nCommunity Advocate for MultipleSclerosis.net\u00a0<\/em><br \/>\n<a href=\"https:\/\/debbiepetrina.com\/\">www.DebbieMS.com<\/a><\/strong><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>March 29, 2022 5th week, MS Awareness Month I let my hair down last night.\u00a0 I posted a distressing message on social media.about MS Awareness Month. I have just reached my 42nd year of living with MS, and I was &hellip; <a href=\"https:\/\/debbiepetrina.com\/?p=819\">Continue reading <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3,5],"tags":[173,305],"class_list":["post-819","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-awareness","tag-march-ms-awareness-month","tag-ms-multiple-sclerosis-managing-ms-ms-information-multiple-sclerosis-information-ms-treatments"],"_links":{"self":[{"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/posts\/819","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=819"}],"version-history":[{"count":12,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/posts\/819\/revisions"}],"predecessor-version":[{"id":831,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/posts\/819\/revisions\/831"}],"wp:attachment":[{"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=819"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=819"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=819"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}