{"id":4044,"date":"2021-06-30T12:25:27","date_gmt":"2021-06-30T16:25:27","guid":{"rendered":"https:\/\/thediversitymovement.com\/?p=4044"},"modified":"2023-12-12T15:04:31","modified_gmt":"2023-12-12T20:04:31","slug":"invisible-illness-lending-my-voice-to-others","status":"publish","type":"post","link":"https:\/\/thediversitymovement.com\/invisible-illness-lending-my-voice-to-others\/","title":{"rendered":"Guest Blog: Invisible Illness &#8211; Lending My Voice to Others"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">I don\u2019t wear bracelets. I don\u2019t do charity walks or 5ks. I don\u2019t even talk about \u201cit\u201d that often, even though I\u2019ve lived with \u201cit\u201d for half of my life and will do so for the rest of it.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I\u2019m your colleague who is living with an invisible illness. <\/span><a href=\"https:\/\/hpi.georgetown.edu\/workplace\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Over 58 million Americans aged 18-65, a full third of this population group<\/span><\/a><span style=\"font-weight: 400;\">, live with one or more chronic illnesses. In my case, it\u2019s a rare, multi-systemic auto-immune condition referred to as <\/span><a href=\"https:\/\/www.mayoclinic.org\/diseases-conditions\/granulomatosis-with-polyangiitis\/symptoms-causes\/syc-20351088\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">granulomatosis with polyangiitis<\/span><\/a><span style=\"font-weight: 400;\"> (GPA).<\/span><\/p>\n<p><span style=\"font-weight: 400;\">For several decades, a GPA diagnosis meant certain death, but thanks to research by a certain Anthony Fauci (you may have heard of him) of the National Institutes of Health\u2019s Laboratory of Immunoregulation, almost all of us who contract GPA are able to live productive lives due to advances in immunosuppressive therapies. There are two forms of GPA: one which aggressively attacks small blood vessels to sabotage the functioning of the lungs and\/or kidneys, and another, so-called \u201climited\u201d GPA, which is more of a \u201cdeath by a thousand cuts\u201d in all areas north of the lungs.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I\u2019ve endured multiple flares of limited GPA and spent very few of the last twenty-four years in a true period of remission. I can no longer remember how many surgeries I\u2019ve had, as that number hit double digits years ago. The illness and side effects of the quite powerful and toxic medications which are used to fight it have caused me to lose hearing in my right ear, develop severe cataracts in both eyes in my mid-40s, and entirely lose my sense of smell. That\u2019s just the beginning.\u00a0<\/span><\/p>\n<p><a href=\"https:\/\/thediversitymovement.com\/library\/%20\" target=\"_blank\" rel=\"noopener\"><img decoding=\"async\" class=\"alignnone wp-image-8876 size-large lazyload\" data-src=\"https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/04\/NEW-TDM-Library-Display-Ad_Large-A-1024x341.png\" alt=\"TDM Library: your one-stop-shop for update, expert DEI Resources. Explore the platform with a free trial. Click here to learn more.\" width=\"1024\" height=\"341\" data-srcset=\"https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/04\/NEW-TDM-Library-Display-Ad_Large-A-1024x341.png 1024w, https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/04\/NEW-TDM-Library-Display-Ad_Large-A-600x200.png 600w, https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/04\/NEW-TDM-Library-Display-Ad_Large-A-300x100.png 300w, https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/04\/NEW-TDM-Library-Display-Ad_Large-A-768x256.png 768w, https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/04\/NEW-TDM-Library-Display-Ad_Large-A.png 1200w\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 1024px; --smush-placeholder-aspect-ratio: 1024\/341;\" \/><\/a><\/p>\n<p><span style=\"font-weight: 400;\">I spent the better part of two years living with never-ending headaches resulting from\u00a0 inflammation of the lining in my skull. My nose has collapsed twice (once after being rebuilt by a plastic surgeon). For the last eight years, I\u2019ve lived with the never-ending specter of my airway narrowing right around my vocal cords, sometimes to where the \u201cpipe\u201d looks like a coin slot. As you can imagine, speaking and breathing can be difficult.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Finally (I hope), I\u2019ve dealt with co-morbidities brought about by medications and weight gain, including diabetes, hypertension, and high cholesterol.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">When I was first diagnosed in September 1997, I was finishing my college degree and working two jobs. Many people told me to quit working, quit school, or even\u2026 quit everything. During those nascent days of the internet, I found a common thread among the 60% or so people who had died from the illness: their families shared that after the diagnosis, their loved ones went home, took to their beds, and never really recovered.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I was determined not to let that be my story.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">My doctors will tell you that there are a few key elements to my survival all of these years. First among those is my will to live. I see purpose in my life and especially how I share that life with my family and friends. Second is my rather immense sense of humor and my ability to see the bright side of life even in the darkest and most painful moments. And third, I have always treated my work as a refuge: a place in my life where I could escape being a patient.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">All these years later, I have achieved some measure of success professionally, as I choose to define that. I participate as an executive in two companies, one of which I own, and I\u2019m thrilled to say that I love my work and the people I get to do that work with\u2014colleagues and clients alike\u2014every day. Those who know me best might describe me as open, yet guarded about my illness, and there are good reasons for that.<\/span><\/p>\n<h3>Fear of Weaponization<\/h3>\n<p><span style=\"font-weight: 400;\">The companies where I ply my trade currently are idyllic in many ways. But, I\u2019ve spent plenty of years in my career highly suspicious of some colleagues and their motives. It\u2019s hard to keep an illness private or invisible when you wear more and more of its scars\u00a0 over the years, but you can find ways to do it if that means your professional survival.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In my former professional life, the highly-competitive corporate culture in which I worked led to a dynamic that seemed to create a lot of \u201cwinners\u201d and \u201closers\u201d and lent me a strong sense of foreboding that any weakness I revealed could one day be used against me. So, I\u2019d only share the details of my illness in quiet conversation with close, trusted associates, while the subject was never broached at all with others.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">This can be especially scary when you question the loyalty of your manager or leader: anyone with whom you have the short end of a power relationship. You never want to see something weaponized against you that should have been under your control. While I never experienced the direct weaponization of my illness, I did sometimes wonder, especially in situations where I sensed an adversary rather than an ally, how my illness was discussed behind closed doors.<\/span><\/p>\n<h3>Neither Pitied Nor Idolized<\/h3>\n<p><span style=\"font-weight: 400;\">As I have opened up, even sparingly, to colleagues and supervisors about GPA and my life with it, I\u2019ve seen the development of a couple of different relationship dynamics: being pitied or being idolized.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">My parents instilled in me a tremendous work ethic and confidence in my ability to meet virtually any challenge. I\u2019ve never sought nor entertained pity for what I\u2019ve encountered over my lifetime with GPA. In my mind, there\u2019s always someone else out there who has it worse than me, whether that\u2019s a child with a brain tumor or an older person dealing with dementia. No matter how I\u2019ve suffered through the years, I have always thrived in some other way.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">But that doesn\u2019t mean I want you to idolize me or find me inspiring. Like almost anyone else you meet at work, I want to be recognized and honored for the quality of my contributions, the innovation of my ideas, and all the aspects of my work that try to change the game for the better. My validation comes from all of that, not how I got through my daily symptom management.\u00a0<\/span><\/p>\n<h3>It\u2019s Exhausting, and There\u2019s Never a Good Time<\/h3>\n<p><span style=\"font-weight: 400;\">It\u2019s so tiring living with a chronic illness. Just the medications, doctor\u2019s appointments, nutrition and wellness concerns, and keeping your family and friends in good spirits when they\u2019re worried like hell about you can be debilitating. Those of us who live with these illnesses are asked to play an intense mental game: one in which we are beset with anxiety or depression, or worse still, plagued by the uncertainty caused by a bad set of lab results, the development of a new symptom or co-morbidity, or the revisiting of symptoms you thought you had nailed down (as I write this, I am dealing with the recurrence of subglottic stenosis, the narrowing of the airway near the vocal cords, for the first time in two years).\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">When you\u2019re sick, meaning living with active symptoms, it\u2019s quite exhausting to talk about illness in a professional context. And when you\u2019re relatively well, as the body takes an easier turn on the inflammation cycle or you\u2019ve achieved remission, you just want to L-I-V-E. As you can see, for me at least, there\u2019s never a good time to talk about GPA in the context of casual or curious inquiry. If you\u2019ve invested in me, I\u2019ll invest back in you, but I\u2019m not going to cheapen my experience, in any direction, for the sake of idle water-cooler talk.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">To those of you who do wear the bracelets, participate in 5ks, and choose an open life as a survivor, let me close by saying how much I love you and embrace those choices as your own.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In writing this piece, I\u2019ve obviously blown the lid off of the privacy I\u2019ve often worked so hard to protect. Here\u2019s why: I want others in my situation to own their own lives, how and when they share their stories, and with whom. I also want to illuminate others, as many have illuminated me on my journey of awakening with regard to diversity about how some of us who are living with invisible illnesses think and feel about these issues.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">That kind of empowerment and enlightenment is worth the price of my privacy.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">For those of you wondering why you should care about this corner of the world of diversity, keep this in mind: just as you\u2019ll find that people of different backgrounds, ethnicities, abilities, and identities bring powerful perspectives and thought processes, often shaped by their experience and the way they\u2019ve handled adversity, so do we. Invisible illness affects people who are also intelligent, smart, incisive, efficient, and prolific.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">How can you help your teammates living with invisible illness at work? As an owner, executive or manager, that might mean greater flexibility with my work schedule and offering paid time off rather than sick days, which those of us with chronic conditions may burn through early in the year.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">A recent <\/span><a href=\"https:\/\/hbr.org\/2021\/02\/how-managers-can-support-employees-with-chronic-illnesses\" target=\"_blank\" rel=\"noopener\"><i><span style=\"font-weight: 400;\">Harvard Business Review<\/span><\/i><span style=\"font-weight: 400;\"> piece from Alyson Meister and Victoria Worley<\/span><\/a><span style=\"font-weight: 400;\"> outlined some ways that you can support your colleagues who live with chronic illness.\u00a0<\/span><\/p>\n<ol>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Lead with empathy: Your feelings on this subject may be tricky, and can sometimes include pity or resentment. <\/span><span style=\"font-weight: 400;\">When a coworker is granted accommodation for a chronic condition, practice compassion, and think how you would feel if the company empowered you in similar circumstances.<\/span><span style=\"font-weight: 400;\">\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Challenge and update your assumptions about what\u2019s \u201cnormal\u201d: many of us tend to hold beliefs such as \u201cthat condition could have been prevented\u201d or \u201cthat person doesn\u2019t live a healthy life.\u201d Many of us inherit our (bad) luck with invisible illness through our family histories, while others (like myself), live with illnesses whose causality is simply unknown or not traceable.\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Ask questions and be open to adapting and learning:\u00a0 let\u2019s all be better about not shoving everyone into a box of our making. When we empathize, that should occur at the individual level based on what our\u00a0 individual colleague needs. If I need you to wear a bracelet, I\u2019ll let you know. But knowing myself, I probably won\u2019t.\u00a0<\/span><\/li>\n<\/ol>\n<p><a href=\"https:\/\/thediversitymovement.com\/library\/%20\" target=\"_blank\" rel=\"noopener\"><img decoding=\"async\" class=\"alignnone size-large wp-image-8041 lazyload\" data-src=\"https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/03\/TDM-Library-Footer-Ad-A-1024x85.png\" alt=\"Display ad for TDM Library. Text says &quot;Find more content like this in TDM Library. Start my free trial&quot;\" width=\"1024\" height=\"85\" data-srcset=\"https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/03\/TDM-Library-Footer-Ad-A-1024x85.png 1024w, https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/03\/TDM-Library-Footer-Ad-A-600x50.png 600w, https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/03\/TDM-Library-Footer-Ad-A-300x25.png 300w, https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/03\/TDM-Library-Footer-Ad-A-768x64.png 768w, https:\/\/thediversitymovement.com\/wp-content\/uploads\/2023\/03\/TDM-Library-Footer-Ad-A.png 1200w\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 1024px; --smush-placeholder-aspect-ratio: 1024\/85;\" \/><\/a><\/p>\n<p><em><span style=\"font-weight: 400;\">Brian Castle is an entrepreneur and executive based in Charlotte, NC.\u00a0<\/span><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>I don\u2019t wear bracelets. I don\u2019t do charity walks or 5ks. I don\u2019t even talk about \u201cit\u201d that often, even though I\u2019ve lived with \u201cit\u201d for half of my life15<\/p>\n","protected":false},"author":2,"featured_media":4050,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[65,5],"tags":[86,79],"tdm_type":[92],"class_list":["post-4044","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-diversity-equity-and-inclusion-fundamentals","category-blogs","tag-disability-accessability","tag-personal-stories","tdm_type-articles"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Guest Blog: Invisible Illness - Lending My Voice to Others - The Diversity Movement<\/title>\n<meta name=\"description\" content=\"How can you help teammates living with invisible illness at work? 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