{"id":1184,"date":"2014-05-20T19:41:49","date_gmt":"2014-05-20T19:41:49","guid":{"rendered":"http:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/?p=1184"},"modified":"2014-05-19T20:13:22","modified_gmt":"2014-05-19T20:13:22","slug":"lupus-is-celebrating-the-survivors-unrealistic","status":"publish","type":"post","link":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/2014\/05\/lupus-is-celebrating-the-survivors-unrealistic.html","title":{"rendered":"Lupus: Is Celebrating the Survivors Unrealistic?"},"content":{"rendered":"

\"Maureen<\/a>I was once told by a person in a responsible position in a patient advocacy organization to “be positive, let them know that lupus isn’t all that bad. Don’t be negative.” The message this well-meaning person seemed to want was more akin to “celebrate the survivor,” a phenomenon borrowed from other disease advocacy realms. And the message irritated me.<\/p>\n

Certainly, it is possible to “survive” certain serious, even life-threatening, illnesses, and I’m very happy for those who have done this. Whether it is cancer, diabetes, or another health challenge, being able to get beyond it and feel healthy again must be a tremendously joyful sensation, as well as encouraging for those who are still battling that particular illness. Certainly, our society celebrates the survivor, heaping praise and titles such as “Courageous” or “Inspiring” upon them. I join in the celebration when I can, knowing how hard the struggle must have been.<\/p>\n

But when it comes to extolling the ease of life with lupus and not explaining how hard it can be,well, \u00a0I think this is misleading and probably upsetting to more than just me. First, there is no cure for lupus (except what Our Lord might choose to bring), people with lupus are more likely to “get through” flares (periods when the disease is active) than experience a cure, and the absence of flare does not mean there is the absence of lupus.<\/p>\n

Second, lupus is very stealthy. Even at times when we might feel fairly good, “the wolf” can be working inside. Living with lupus requires constant vigilance, regular monitoring by our medical teams, and the understanding that we need to take good care throughout.<\/p>\n

Third, \u00a0I happen to believe that lupus patients would rather learn much more realistic information that be fed only “positive” things. That way, they can be better equipped to meet the highs and lows of the lupie life – and be stronger for it.<\/p>\n

In my talks and writing, I try to talk about the benefits that have come from my journey with lupus. Indeed, there have been many positive things that I’ve gleaned and many blessings are, no doubt, still to come. But I’ll be the first to say it’s not been an easy road, nor a finite one. Each day presents hard challenges, and I know that I am not alone in this. \u00a0I do try to focus on good things, uplifting things, loving and lovely things, including the blessings from lupus. But, just as the title of my blog suggests, some days are “good” and some days are “bad.” With good faith, clear eyes, and a determined heart, the “bad days” won’t seem as bad, and the “good days” will be even more blessed.<\/p>\n

Peace,<\/p>\n

Maureen<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

I was once told by a person in a responsible position in a patient advocacy organization to “be positive, let them know that lupus isn’t all that bad. Don’t be negative.” The message this well-meaning person seemed to want was more akin to “celebrate the survivor,” a phenomenon borrowed from other disease advocacy realms. And…<\/p>\n","protected":false},"author":548,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3,43,4,379],"tags":[1052,1055,183,1054,265,502,1056,18,1053,1051],"class_list":["post-1184","post","type-post","status-publish","format-standard","hentry","category-chronic-pain-and-illness","category-encouragement-in-life","category-words-of-encouragemnent-and-info-for-all","category-lupus-2","tag-cancer-survivors","tag-feeling-irritated","tag-gods-love","tag-having-a-bad-day","tag-joy","tag-living-with-lupus","tag-lupie","tag-lupus","tag-surviving-an-illness","tag-survivors"],"yoast_head":"\nLupus: Is Celebrating the Survivors Unrealistic? - Good Days...Bad Days With Maureen Pratt<\/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:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/2014\/05\/lupus-is-celebrating-the-survivors-unrealistic.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Lupus: Is Celebrating the Survivors Unrealistic? - Good Days...Bad Days With Maureen Pratt\" \/>\n<meta property=\"og:description\" content=\"I was once told by a person in a responsible position in a patient advocacy organization to “be positive, let them know that lupus isn’t all that bad. 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She expected to be writing scripts. God had other plans. A few years after her graduation, Maureen was diagnosed with a life-threatening case of organ-involved lupus. Her life turned upside down as she grappled with the effects of the illness and other health conditions that ensued. She was no stranger to serious health challenges; even as a child, Maureen had survived numerous bouts of pneumonia, flu, and other infections. But lupus made her take a fresh look at her life goals - and took herlifelong, strong Catholic Christian faith and writing in a direction she'd never imagined. Today, Maureen writes and speaks about walking with the Lord while living with chronic pain and illness. Her most recent book is \"Don't Panic!: How to Keep Going When the Going Gets Tough (Franciscan Media). She is also the author of, \"Peace in the Storm: Meditations on Chronic Pain & Illness\" (Image Books\/Randomhouse), \"Beyond Pain: Job, Jesus, and Joy\" (Twenty-Third Publications), \"The First Year: Hypothyroidism, Second Edition\" (Perseus) and \"Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your LIfe.\" She writes the syndicated column, \"Living Well,\" for Catholic News Service, and has also written for Saint Anthony Messenger Magazine, Journey for Women Magazine, The Upper Room Magazine, LupusNow, and Arthritis Today. Maureen's health continues to be a challenge, however she feels honored to be able to bring her perspective, from experience and knowledge, to others. \"Good Days...Bad Days with Maureen Pratt\" is a new way for Maureen to reach people who carry the burden of illness and pain in their lives, or who care for someone who does. Through the blog, she hopes to bring issues of health, wellness, and spirit into focus and, especially, inspire others that, no matter what health challenges, illness, or hardships they endure, each person can find a good way to realize the wonderful potential God has placed within each heart and soul.","sameAs":["http:\/\/www.maureenpratt.com"],"url":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/author\/mpratt"}]}},"_links":{"self":[{"href":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/wp-json\/wp\/v2\/posts\/1184","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/wp-json\/wp\/v2\/users\/548"}],"replies":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/wp-json\/wp\/v2\/comments?post=1184"}],"version-history":[{"count":1,"href":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/wp-json\/wp\/v2\/posts\/1184\/revisions"}],"predecessor-version":[{"id":1185,"href":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/wp-json\/wp\/v2\/posts\/1184\/revisions\/1185"}],"wp:attachment":[{"href":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/wp-json\/wp\/v2\/media?parent=1184"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/wp-json\/wp\/v2\/categories?post=1184"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/gooddaysbaddays\/wp-json\/wp\/v2\/tags?post=1184"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}