{"id":6039,"date":"2016-09-20T10:00:12","date_gmt":"2016-09-20T14:00:12","guid":{"rendered":"https:\/\/medisafeapp.wpengine.com\/find-support-need-pain-community-interview\/"},"modified":"2016-09-20T10:00:12","modified_gmt":"2016-09-20T14:00:12","slug":"find-support-need-pain-community-interview","status":"publish","type":"post","link":"https:\/\/medisafeapp.com\/pt\/find-support-need-pain-community-interview\/","title":{"rendered":"Find The Support You Need in The Pain Community (Interview)"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">At Medisafe we believe that a support system is crucial for sticking to your meds and better health results (Our Medfriend feature <a href=\"https:\/\/www.medisafe.com\/research\/medfriend-research\/\">can attest<\/a> to that). Online communities is a special kind of support system, since it easily brings together tens, hundreds or even thousands of people from around the world with something in common, so they can help each other cope- no matter where they live. In honor of Pain Awareness Month, we would like to introduce you to The Pain Community and its\u00a0Chair, Maggie:<\/span><\/p>\n<div class=\"wraper-sharetwitter\">\n<p class=\"twitter-text\">Find The Support You Need in The Pain Community #PainAwarenessMonth<\/p>\n<p><a class=\"twitter-lnk clicktotwitt\" href=\"#\" target=\"_blank\" rel=\"noopener\">CLICK TO TWEET<\/a><i class=\"im-twitter click-to-tweet-ico\"><\/i>\n<\/div>\n<ol>\n<li><b> Tell us a bit about yourself and about <a href=\"https:\/\/paincommunity.org\">T<\/a><\/b><a href=\"https:\/\/paincommunity.org\"><b>he Pain Community<\/b><\/a><b>:<\/b><\/li>\n<\/ol>\n<p><span style=\"font-weight: 400;\">Professionally, I have an MBA in accounting with experience in banking and business management. I am also a person who lives with a chronic pain condition called Ehlers Danlos Syndrome (EDS), and, for the last 22 years, I\u2019ve been working actively to improve the lives of others with pain. I have served as a board member of several non-profit support organizations including the Ehlers-Danlos National Foundation and the American Pain Foundation. In these roles, I\u2019ve testified at state and federal policy hearings, written articles and coached hundreds of people to self-advocate for better care. A few years ago, when the American Pain Foundation closed its doors, it became clear that there needed to be a virtual resource where people with pain could go to get current information and stay connected with each other (via chat rooms and discussion forums). So many people with whom I stayed in touch, expressed how deeply saddened they were by the loss of their \u201cpain community,\u201d and they were interested in developing a new organization that would provide people with pain with reliable information, education, advocacy, and a way to connect with each other on an on-going basis. Additionally, they wanted the organization to embrace an integrative model of care that focused on wellness and encourages people to actively participate in their health and pain care (see <\/span><a href=\"https:\/\/paincommunity.org\/about-us\/key-\"><span style=\"font-weight: 400;\">https:\/\/paincommunity.org\/about-us\/key- messages\/<\/span><\/a><span style=\"font-weight: 400;\"> for more information). In 2013, after a year of careful planning, <\/span><a href=\"https:\/\/paincommunity.org\"><span style=\"font-weight: 400;\">The Pain Community<\/span><\/a><span style=\"font-weight: 400;\"> was launched.<\/span><br \/>\n&nbsp;<\/p>\n<ol start=\"2\">\n<li><b> What inspired you to become an active volunteer and Chair of the Community?<\/b><\/li>\n<\/ol>\n<p><span style=\"font-weight: 400;\">Many things have inspired me to become an active volunteer and President of The Pain Community Board. Here are a few of those things. I was diagnosed with the pain condition Ehlers-Danlos Syndrome in the early 1970s. As a teenager, I expected that the pain issues I was dealing with could be \u201cfixed.\u201d Over time, I came to realize that my pain would be ongoing and that I had to find ways to cope with my pain and stay as strong and healthy as possible. I had to do this on my own because there were no organizations or online resources where I could get the information I needed. Being the determined kind of person I was (and still am), I began building up a \u201ctoolbox\u201d of skills and activities that could help me understand and manage my pain, cope with my physical limitations, and lead a productive life. One of the most important things I learned is that by staying active and engaged and contributing to others empowered me and had enormous healing power.<\/span><\/p>\n<div class=\"wraper-sharetwitter\">\n<p class=\"twitter-text\">&#8220;I came to realize that my #pain would be ongoing &amp; that I had to find ways to cope&#8221;<\/p>\n<p><a class=\"twitter-lnk clicktotwitt\" href=\"#\" target=\"_blank\" rel=\"noopener\">CLICK TO TWEET<\/a><i class=\"im-twitter click-to-tweet-ico\"><\/i>\n<\/div>\n<p><span style=\"font-weight: 400;\">Story sharing: Part of my own self-healing included becoming active in patient organizations. In 1998, I became a board member of the Ehlers-Danlos National Foundation, and in 2007, I became a board member of the American Pain Foundation. Serving in those capacities gave me the opportunity to collect and share stories of other people with pain. By doing this, I discovered that \u201cstory sharing\u201d was an important tool because it allowed people with pain to connect with someone who listened and understood their challenges; and, for me, as a board members of those organizations, it gave me the chance to communicate the challenges of living with pain to others (family members, the public, policy makers, and the media). The more I did this, the better I became at drawing out people\u2019s stories and discovering what was unique, remarkable, and inspiring about each person. This work, I found, not only helped others, it also helped me cope with my own pain issues and inspired me to get better and better at it and contribute more. The Pain Community gives people with pain the opportunity to communicate with others, feel that they are connected, and have their stories heard.<\/span><\/p>\n<div class=\"wraper-sharetwitter\">\n<p class=\"twitter-text\">I began building a toolbox of #skills that could help me manage my #pain &amp; lead a productive life:<\/p>\n<p><a class=\"twitter-lnk clicktotwitt\" href=\"#\" target=\"_blank\" rel=\"noopener\">CLICK TO TWEET<\/a>\n<\/div>\n<p><span style=\"font-weight: 400;\">Information sharing: When I began my \u201cpain journey,\u201d no one was talking about chronic pain as a serious health condition and information was hard to find. Today, pain is a major health topic, but there is still little agreement, among pain professionals, on how it should be treated\/managed. And many, if not most, people with pain find it difficult to navigate through the healthcare system, or even find a healthcare professional who is knowledgeable about pain. Many cannot even get a good diagnosis. To confuse things even more, for several years, pain physicians were in their own battle arguing over whether pills or shots were best. Today, there is growing agreement that people with pain need individualized, person-centered care to manage their pain and return to \u201cwellness\u201d and\/or a state of wellbeing. The Pain Community supports an integrative model of care (and it\u2019s the only patient organization that does this), and promotes it through the information it offers to members and website visitors; through its support groups (people help each other to regain their lives and be as healthy as possible) and information provided by experts; and through advocacy. For me, seeing how The Pain Community is truly helping people deal with their pain, inspires me on a daily basis. It pushes me to learn more and more about chronic pain and how it can be treated and ways I can better serve the pain management community.<\/span><\/p>\n<div class=\"wraper-sharetwitter\">\n<p class=\"twitter-text\">&#8220;Seeing how The Pain #Community is truly helping people deal with their #pain inspires me&#8221;<\/p>\n<p><a class=\"twitter-lnk clicktotwitt\" href=\"#\" target=\"_blank\" rel=\"noopener\">CLICK TO TWEET<\/a>\n<\/div>\n<ol start=\"3\">\n<li><b> What suggestions do you have for those living with pain and for those caring for them?<\/b><\/li>\n<\/ol>\n<p><span style=\"font-weight: 400;\">Some suggestions for patients:<\/span><\/p>\n<ul>\n<li><span style=\"font-weight: 400;\"> Take control of your overall health and the management of your pain. Start by making healthful lifestyle changes such as eating well, moving\/exercising, reducing stress, etc.<\/span><\/li>\n<\/ul>\n<ul>\n<li><span style=\"font-weight: 400;\"> Insist on a thorough assessment and a treatment plan that includes options.<\/span><\/li>\n<\/ul>\n<ul>\n<li><span style=\"font-weight: 400;\"> Insist on care that is person-centered and tailored to your individual needs. The plan should consider who you are\u2014in mind, body, and spirit, and in the context of your environment, not just what condition you may have. Insist on care in which there is open communication between you and your health care providers.<\/span><\/li>\n<\/ul>\n<ul>\n<li><span style=\"font-weight: 400;\"> Understand that there is no single medication or procedure that will make you better. Learn\u00a0<\/span>about and consider all appropriate modalities (both conventional and complementary and\u00a0alternative approaches), and clinicians to achieve wellness (including your physical and mental\u00a0health, function, meaning and purpose).<\/li>\n<\/ul>\n<ul>\n<li><span style=\"font-weight: 400;\"> Get engaged. Get active. As much as possible, start doing things that bring pleasure and meaning to your life.<\/span><\/li>\n<\/ul>\n<ul>\n<li><span style=\"font-weight: 400;\"> Above all, understand that there is hope\u2014that you can get better. You can become stronger and healthier in your body and mind, and with that, regain function, reduce your pain, and restore meaning and pleasure to your life.<\/span><\/li>\n<\/ul>\n<p><em><strong>For caregivers, I would suggest helping the person with pain understand the points made above. Additionally, I would say:<\/strong><\/em><br \/>\n<a href=\"https:\/\/www.medisafe.com\/main-site\/wp-content\/uploads\/2016\/09\/In-appreciation-to-all-caregivers-out-there..png\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-4099 alignright\" src=\"https:\/\/www.medisafe.com\/main-site\/wp-content\/uploads\/2016\/09\/In-appreciation-to-all-caregivers-out-there.-300x300.png\" alt=\"In appreciation to all caregivers out there.\" width=\"300\" height=\"300\" \/><\/a><\/p>\n<ul>\n<li><span style=\"font-weight: 400;\"> Be patient and listen actively to the person you are caring for. By listening to the person\u2019s story and complaints, you will be able to help him\/her get a good diagnosis and find the right\u00a0<\/span><span style=\"font-weight: 400;\">combination of therapies that will help them increase their activities and improve the overall\u00a0<\/span><span style=\"font-weight: 400;\">quality of their lives. By listening, you will demonstrate to the patient that you care and that\u00a0<\/span><span style=\"font-weight: 400;\">he\/she is not alone.<\/span><\/li>\n<\/ul>\n<div class=\"wraper-sharetwitter\">\n<p class=\"twitter-text\">By listening, you will demonstrate to the #patient that you #care and that he\/she is not alone<\/p>\n<p><a class=\"twitter-lnk clicktotwitt\" href=\"#\" target=\"_blank\" rel=\"noopener\">CLICK TO TWEET<\/a>\n<\/div>\n<ul>\n<li><span style=\"font-weight: 400;\"> Learn all you can about the person\u2019s conditions and ways you can help relieve the pain beyond medications and other medical treatments. This means learning about activities that can be done at home such as listening to music, making art, meditating, eating good food, exercising, etc., and, suggesting therapies delivered by clinicians such as massage and acupuncture.<\/span><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<ol start=\"4\">\n<li><b> How can people benefit and take part in The Pain Community?<\/b><\/li>\n<\/ol>\n<p><a href=\"https:\/\/paincommunity.org\/\"><span style=\"font-weight: 400;\">PainCommunity.org<\/span><\/a><span style=\"font-weight: 400;\"> offers a host of resources and information that are available around the clock. For example, there are discussion forums where people can always post messages and other people will respond with their experiences or supportive messages. There are hosted live chats several times a week. The chat room is always open even when there is not a host, so people could go there and meet up with somebody who\u2019s somewhere else in the country (or the world) who is also looking for support or interaction. There are lots of great blogs on a variety of topics. Some are informational, some are educational, and some are inspirational. There is an e-newsletter that is distributed with articles information and polls. Poll results are shared in subsequent e-newsletters so we\u2019re always asking questions getting people to participate by sharing their concerns, interests, and tips.<\/span><br \/>\n&nbsp;<\/p>\n<ol start=\"5\">\n<li><b> What message would you like to tell our users who are living with pain?<\/b><\/li>\n<\/ol>\n<p><span style=\"font-weight: 400;\">The key message is: there is hope. There is hope for feeling better and enjoying a better quality of life. There is hope for getting out there and making a difference. To people with pain, I would say, \u201cFind your voice, tell your story, reach out to others with pain and find out what you might have in common. Connect with others and find resources that would apply to your symptoms.\u201d I would also recommend avoiding communicating only with others that share the same condition. There are issues and situations that apply to all of us with pain. Somebody with joint pain like in Ehlers-Danlos Syndrome for example, will access the same healthcare services and overcome the some of the same challenges as somebody with arthritis or with Multiple Sclerosis.<\/span><\/p>\n<div class=\"wraper-sharetwitter\">\n<p class=\"twitter-text\">&#8220;There is #hope. There is hope for feeling better and enjoying a better quality of life&#8221;<\/p>\n<p><a class=\"twitter-lnk clicktotwitt\" href=\"#\" target=\"_blank\" rel=\"noopener\">CLICK TO TWEET<\/a><i class=\"im-twitter click-to-tweet-ico\"><\/i><br \/>\n&nbsp;\n<\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>At Medisafe we believe that a support system is crucial for sticking to your meds and better health results (Our Medfriend feature can attest to that). Online communities is a special kind of support system, since it easily brings together tens, hundreds or even thousands of people from around the world with something in common,&hellip;<\/p>\n","protected":false},"author":2,"featured_media":6040,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[170],"tags":[208,304,186],"class_list":["post-6039","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","tag-caregiver","tag-community","tag-pain"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Find The Support You Need in The Pain Community (Interview) - MedisafeApp<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/medisafeapp.com\/pt\/find-support-need-pain-community-interview\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Find The Support You Need in The Pain Community (Interview) - MedisafeApp\" \/>\n<meta property=\"og:description\" content=\"At Medisafe we believe that a support system is crucial for sticking to your meds and better health results (Our Medfriend feature can attest to that). 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