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Janet Coburn

The Invisible Wounds of Childhood Bullying

Let me tell you about the time I got stoned in third grade. I was a weird kid – smart, scrawny, emotionally out-of-step, lonely. I dressed funny. I was no good at sports. In short, I was bully-bait. One day I was waiting at the bus stop with some other kids. They decided it would be a fun game to throw rocks – broken pieces of macadam – at my feet. I jumped over them easily, laughing along. Then one of them threw a rock and hit me in the head. As I was sobbing and bleeding, a passing teacher rescued me and called my mother. The kids ran off, yelling, “We didn’t mean to hurt her!” I was wounded, nonetheless. Three stitches later, I was if not as good as new, at least able to carry on. The scar on the outside has since faded to invisibility. The scar on the inside is invisible, too, but very much still with me. A lot of us have invisible wounds, and not all of them come with physical scars. There’s a whole category of conditions called “invisible illnesses.” They’re the ones that don’t come with wheelchairs or crutches or seeing-eye dogs. People who look “normal” on the outside but are fighting like hell on the inside. Some of these conditions are autoimmune disorders. Others are caused by developmental difficulties, uncommon viruses, and even hormonal disruptions. Then there are the ones that live in the brain. In memories. In scars no one can see. In mental illnesses. What was wrong with me was mental and emotional, inside my brain. Maybe the other kids could sense that, and that was what made me a target. There are a lot of the walking wounded among us, along with non-ambulatory people who are also wounded in other ways. People with brain injuries or PTSD. These disorders can strike anyone, and you can’t tell who those people are simply by looking at them. In cases of serious mental illness, in particular, the wounds and scars, while internal, can be deadly. At least once, my own brain has tried to kill me. Bipolar depression, combined with irrational thinking and problems in the world outside my brain, left me with seemingly only one choice. Fortunately, I didn’t act on the pain. I lived through it. Too many of us have invisible, internal wounds. Too many of us spend enormous amounts of time and energy pretending that we don’t. For some reason, internal wounds seem more shameful, less understandable, than external ones. A broken leg elicits sympathy. A broken brain, not so much. I know that the rock that hit my head wasn’t what broke my brain. Bipolar disorder is much more subtle than that. Whatever its causes – and the jury seems to be still debating that – a minor physical impact is not considered to be one. The seeds of my bipolar disorder were likely already there, lurking in my differentness, my emotional oddities, my uncooperative but active brain. But the incident sure didn’t help. It made me more vulnerable to the shocks and disappointments of life as a weird kid. It took a pothole-sized chunk out of what should have been my developing self-esteem. It opened up crevices in my brain where the doubts, fears, insecurities, and excesses of bipolar disorder could lodge. Wounded people surround us every day. Sometimes the pain leaks out around their eyes. Others are more adept at hiding it. The important thing to know is that anybody – anybody – you see on the street or meet at work or at church or at the gym could have one of those invisible scars. Not all the broken look broken. Not all wounds are visible. Not all scars are external. Be gentle with other people. You never know who’s hurt inside.

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Describe your mood today using…

<p>Describe your mood today using…</p>
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Describe what this month  has been like for you using 3 emojis.

<p>Describe what this month  has been like for you using 3 emojis.</p>
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Carrie McLeod

Why We Shouldn't Excuse Inaccessibility

Last week I went on a weekend trip with my family. We did so many fun things, so many amazing memories were made, and many laughs were shared. While I was there, though, my family and I went shopping in an area that turned out to not be very accessible. This didn’t turn out to be much of a problem for my family and I, at least not after a flat wheelchair tire issue was solved, but that’s a discussion for another time. I am a part time wheelchair user, meaning that when I came to a store with steps at the entrance, I could just walk into the store using my crutches — that’s why the lack of accessibility wasn’t really much of a problem for us. Many wheelchair users, however, are not capable of doing this and days later I am still thinking of those people and what it must feel like to not be able to go into certain stores at all because they aren’t accessible. I got a small taste, but it’s their everyday reality. Like many problems that plague the disabled community, people make excuses for why it’s OK that this happens. They justify it, and they come up with so many things that are apparently more important than a disabled person having equal access “It would cost too much money to make these buildings accessible!” “The businesses may have to be shut down while these accommodations are being added!” “Fixing all of these places isn’t practical!” “It’s too difficult to add accommodations to old buildings!” There are just a million excuses people use — myself included in the past, if I am being completely honest with you — to justify people with disabilities being denied entry into buildings and stores because they’re not accessible. None of those excuses should come before giving people with disabilities equal access — to these businesses, to these buildings, and to the world as a whole. I also realized although this isn’t really my own personal problem, it needs a solution. People with disabilities don’t deserve to be excluded, brushed to the side, and made to feel less important than everyone else. People with disabilities deserve support when it come to these issues, not counterarguments that excuse their poor treatment just because it’s been the norm for so long. Not to mention, just because myself and other part time wheelchair users can get out of their own wheelchairs to walk into stores doesn’t mean we should have to — it’s more difficult for us, the older we get the more painful walking can become for many of us, and it’s an added hassle trying to figure out who will watch the wheelchair while the wheelchair user is inside the store or the building so it doesn’t get stolen. Yes, people steal wheelchairs. People who use wheelchairs, even part time, deserve better than that. Even able-bodied people deserve better than that — you might not realize it, but accessible buildings could benefit you in many ways as well. We all deserve better — so let’s do better, expect better, and demand better.

Community Voices

Hope and a purpose

I'm living with Central Core Disease but I'm still living! I'm 58, with 3 children and 8 grandkids. Truly blessed! I've been thinking about my life lately, and I remembered my "friend" in the bed next to me before, during and after our scoliosis surgery, both age 15. We laughed, sang along with the radio, joked with the staff, and had no idea what life would look like for us. We had hope for our futures. I had CCD, she did not. Years later, I see how I have continued to laugh, sing, and joke around to show others how well I am doing and to be a light to people who had less to deal with than I did. I didn't show the painful, weak side of myself.
I recently moved, and met my neighbor. She has CMT. She has extreme hearing and scent sensitivity. She never comes out of her house. Never.
Now I think I was given this 'gift' of being put here for a reason. We lift each other up with daily phone calls, we share with brutal honesty the effects of our disease(s), we listen and sing to music, and encourage one another. We respect each other with time alone when we have bad days. We text and e-mail. There is only one wall between us. We never see each other. But we are bonded.
Never give up. I have a new purpose, at 58. I never thought I'd get this 'old'. I didn't WANT to. I have a new hope. I have a purpose.
#CentralCoreDisease

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Misconceptions About Living With a Rare Disease

On World Rare Disease Day, groups and communities representing over 7,000 rare diseases gather together to unify their messages and support one another. With so many conditions, and new ones continuously being discovered, it’s sometimes hard for others to grasp what it really means to live with a rare condition, or care for someone who’s rare. The Mighty teamed up with the National Organization for Rare Disorders (NORD), a non-profit organization supporting individuals and families facing rare conditions through education, patient advocacy and research, and asked our communities, “What’s one misconception about living with a rare condition?” Their answers show that indeed, there are many who think it’s a much easier path than it is. The struggle to receive access to treatment and care, as well as a knowledgeable medical team is very real. Here’s what they had to say: “One misconception about rare disease is that people think doctors and researchers are lining up to study you, do research and help you – and that doctors will know what to do with you. Nope, nope, and nope. There are no adult outcomes, longevity, or lifespan knowledge for my children’s disorder. We are literally figuring it out as we go along.” – Lindsey C. “When people say, ‘I hope she gets better or I hope she gets healed.” I know it’s very well-meaning, but when you have a genetic disorder, every cell in your body contains your mutation, so that’s just simply not possible. I just smile now; I’ve stopped trying to explain.” – Kristy L. “Some people think that people living with rare diseases have no value, and that we aren’t worth curing.” – Julianna K. “One misconception is that if I don’t make it to a doctor’s appointment, I’m not really sick. Sometimes the symptoms of my rare disease prevent me from making it to the doctor.” – Heather S. “Treatments are not the equivalent to being cured. It is frankly just treatment. I am still fighting. I am still sick. I will need ongoing treatment forever to live as stable a life as possible.” – Mandy F. “There is a misconception that having a rare disease gets easier the longer you have it. In reality, you get more fatigued and behind with your life.” – Patricia C. “Some believe that those who share the same rare disease can be treated the same, but that isn’t the case. What works for one doesn’t work for everyone.” – Angie G. “People that don’t have to live day-to-day with multiple, rare, chronic and degenerative diseases like I do don’t understand that it’s a full-time job, even though I am unable to work. It’s a constant battle juggling multiple doctor’s appointments and trying to keep my symptoms under control. So unless they’ve never walked in my shoes, they have no place to judge me.” – Amelia C. “It seems to me that folks assume rare diseases are ‘covered’ by insurance like any other condition. They are surprised to discover that the medicines I need — the treatments, even the doctors, are as rare as hens’ teeth and six times as expensive.” – Carolle C. “That we don’t have good days where we can pretend to be like everyone else. Just because we are in pain doesn’t mean we don’t enjoy going out with friends, shopping, or being social.” – AnneMarie G. “That the treatment for a much more common disease could also work on a rare disease, even if they only have one symptom in common, but completely different causes.” – Katherine O. “People think that if I’m smiling and seemingly happy, I’m not in pain. They assume I’m ‘all better.’ When in reality, I’m dying on the inside and just want to go back to bed.” – Ali K. “Some think that I should be better after all the doctor’s visits. It’s not easy to treat something that even your physicians don’t fully understand.” – Mindy A. “It’s a misconception that a diagnosis comes quickly.” – Karen R. “With a rare disease, it’s nearly impossible to get others to understand you’re in pain if you can’t show them.” – Christy H. “We aren’t on some kind of a stay-at-home vacation just because we have a debilitating rare condition.” – Tessie A. “Our society thinks it takes a special kind of person to care for someone with a rare disease or disability. Nope. It just takes a kind of person who displays basic human qualities and has a lot of love and patience.” – Elizabeth B. “You can live a joy filled life with a chronic illness. It doesn’t necessarily mean that you feel good, but that you choose to be joyful.” – Michelle P. “I’ve had people think that changing my food and/or diet will completely ‘cure’ my rare disease, which is not the case.” – Jenn S. “There’s an assumption that all doctors know and learn about rare diseases. This is certainly not true.” – Sandra R. “It’s frustrating when people tell me, ‘But you look great!’ My response? ‘Thanks! You don’t see me on the days I look like my medical record.’” – Dawn D. “People need to understand that we oftentimes don’t outwardly look physically ill. We could be your neighbor, your nurse, your teacher. You walk past lots of rare disease patients every day and have no idea who they are based on appearance alone.” – Kaitti M. “I think a major misconception of rare disease is that a diagnosis is given from birth or sought after. This is not always the case. Some rare disease patients are born in perfect health and live years before they have a ‘trigger’ to their disease. Literally overnight, families will have to live with massive changes. They will now learn to live with severe disability and the medical maze of rare disease.” – Kim S. “Don’t think that we don’t love what we have. Having a rare disease comes with pluses and minuses, but I wouldn’t trade my life if given the choice. So many incredible people have come into my life due to my rare disease. The tough times I endured have made me a better person.” – Kendra G. “A misconception of living with rare disease is that all experiences are the same. Instead, those experiences of people living with rare disease are as diverse as the people who live with even the same rare disease. There may be similarities to symptoms and treatments, but pain, medications, therapies, appointments, lifestyles will differ depending on who is living with the rare disease. We are still a kaleidoscope of our race, nationality, ethnicity, gender, sexuality, age, class and ability. Telling our complete and unique stories is imperative to patient-centered medicine. ” – Rebekah P. Do you live with a rare condition or care for someone who’s rare? What’s one misconception about living with or caring for someone with a rare disease? Let us know in the comments below.

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Write a haiku about your weekend #52SmallThings

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Acceptance of your Whole Self 🌺

<p>Acceptance of your Whole Self 🌺</p>
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Which area of your life does your depression impact the most?

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