It’s February 29, 2016…Rare Disease Day! So today I challenge you to give a gift to the dark side of rare disease!

The last day of February each year, the world recognizes rare disease and the impact these 7,000 unique illnesses have on patients, caregivers, physicians, drug companies and our entire heath care system. Today is the day we raise the flag of awareness to advance hope, elevate awareness and provoke engagement. That’s the upside of rare disease day!

Inside each home and family impacted by rare disease, the story of awareness is secondary to another much, much more difficult story…the emotions, the physical reality and the economic impact of sickness. This is the dark side of rare disease.

Rare leaves you LONELY.

When despite best efforts no one really understands your rare disease, having a rare disease is lonely. Even though people may ask how you’re doing, their inquiry is usually phrased in terms of a comparison to getting better. There is no cure for most rare diseases; there is no better. We need genuine moments of understanding and friendship.

Rare finds you FEARFUL.

When your body regularly fails and your world isn’t safe, facing rare disease every day takes courage beyond what’s recognizable. Your paradigm for the world must be different, because you often cannot do normal everyday activities in the same fashion as others. We need safety. We need accommodations to be commonplace and offered generously by others.

Rare makes you ANGRY.

When your world keeps shrinking because your illness demands center stage, illness can be infuriating. You want to do and be more, and illness stands in your way. Treatments are few and medications are expensive. In most cases, medical goals for rare disease include increasing coping skills and decreasing pain and illness, not fixing the problem. We need an enlarging world. We need real hope. We need cures.

Rare keeps you CONFLICTED.

When to do simple daily tasks, you must choose between health and illness, having a rare disease can feel like daily sacrifice. In order to stay as healthy as possible, you cannot live a “normal” life, but where do you draw the line? When should you accept the consequences of increased illness to do something like work, or play or be there for your family? We need a compass to point us toward the most important choices. We need compassion.

Rare runs you TIRED.

When your emotional and physical resources are regularly operating on empty, rare disease can leave you exhausted. To get up and get to work or school can take an extraordinary amount of effort some days or every day. And emotional fatigue can be even more draining. We need borrowed energy. We need boundaries. We need an extra dose of kindness regularly.

Rare holds you BROKE.

When the cost of insurance, medications, therapies, travel to specialists and daily medical needs mount, rare disease can leave you without adequate financial resources. When you have a rare disease, you plan to go without. With illness, it is more important that you purchase medicine than new clothes. And with rare disease, it’s vital that you spend your money and vacation hours on traveling to specialists, not getting away on the perfect vacation. We need better financial options. We need better medical insurance. We need financial help.

Who do you know with a rare disease? Have you considered that along with the courage, character and strength that are built through struggling with rare disease, there is a dark side?

In honor of Rare Disease Day, I challenge you to give someone who has a rare disease one or all of the following:

• Friend-filled understanding
• Life-changing accommodations
• World-enlarging hope
• Choice-making compassion
• Your own physical energy
• Your financial help

Turn the dark side around and give someone with a rare disease HOPE!

Author’s note: three members of our family have a rare disease, including Mast Cell Disease, Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome.

The post The Dark Side of Rare Disease first appeared on Uncommonly Brave.

I came upon this quote recently. Drink it in…read it slowly as to savor it.

“For while the tale of how we suffer, and how we are delighted and how we may triumph is never new, it always must be heard. There isn’t any other tale to tell. It’s the only light we’ve got in all this darkness.” – James Baldwin

When I came upon this quote, it immediately spoke to the very core of my heart, perhaps even my soul. It’s true; while the tales of acute or chronic illness are never truly new, they still deserve to be told. My story, the story of my family, as common as it may be, still needs to find its wings and flutter into form.

As I write, I sit in the common area of the Ronald McDonald House. In the background I hear families preparing dinner, playing games and telling and retelling their stories of what landed them in this terribly special, but never-in-a-million-years-wanted-to-be-needed place. Forty-two rooms. Hundreds of stories per year. Over the years, we’ve spent well over one hundred days and nights in this place. This time it is a wonderful family from China seeking treatment for their son’s spinal tumor, a girl with a progressive autoimmune disorder who doctors agree has a limited life-span, and a teen with complications from a past brain tumor and with a new mystery illness. And it’s a myriad of others, too many to list.

Our story of Mast Cell Illness, Ehler’s Danlos Syndrome, Postural Orthostatic Tachyardia Syndrome, Developmental ADHD, Traumatic Brain Injury and the like seems to pale in comparison. I don’t know why. Our story is not less real. It is not less life altering. And it is not even less complicated, especially because there are three of us in one family: with three sets of doctor’s orders to follow, three sets of ever-changing medications and three unique ways of managing chronic illness. Perhaps I am simply so intimately acquainted with our story that the complex seems simple when I recount it.

It would take miles of paper to tell the tale of how we landed in this place. For now, it’s sufficient to know that while some people find themselves facing health care crisis in an instant, our process has been much more like a small snowball rolling down a hill filled with fresh new snow, gathering steam and growing larger all the while. And try as I might to stop the impending avalanche of symptoms, diagnoses and treatments, the snowball has continued to grow.

Though I can talk about our family illness story for years if you ask, other than my close friends whom I probably bore with all the details, you will not know our true tale. In part, we keep the story silent to stop from “boring” families without health care issues of their own. Sometimes we keep the details hidden because unless you’re experiencing the symptoms daily, you could never understand the extent to which they radically alter life. But perhaps the strongest reason I don’t share our story is that it’s hard. And hard can be discouraging. I don’t like to be discouraging.

For our family, living with chronic illness means each day is like a minefield we are forced to cross. It’s hard when mom has daily trouble breathing, or when our girl has unquenchable levels of pain or when our son experiences life-altering memory problems. Our story includes fear of daily anaphylaxis, autonomic systems that don’t function and electrical wiring in the body run amuck. And the list goes on.

Every time a symptom crisis occurs, I feel a catch in my chest; I think the tightness in my throat, the instantaneous nausea and the feeling of despair that grips my core is my physical expression of suffering. Someone once told me that while pain is inevitable, suffering is a choice. I completely agree…in part; suffering is an emotional decision. I CAN choose to see the good in our situation, to choose joy in the midst of pain. (And if you know me, I do; perhaps I find the good in illness to a fault.) Normally, I make a choice to evade suffering and deal head-on with pain. Yet, I must firmly disagree with the whole of that paradigm.

Sometimes, the fatigue of the daily struggle against pain and illness lets suffering stealthily creep into my soul; that is one part of the tale I believe James Baldwin says must be heard. When moments of suffering crash into my soul, in a single instant I grieve every loss of years of illness. Every dismissive doctor, every lasting symptom, and every outing ever missed cries for attention. Scenes of the active family life we will never have taunt me. Flashes of pain, grief and loss rapidly fill the pages of my mind’s illness memoir. For as many moments as I allow, suffering takes hold. Like a bad flu, it wears me down, robbing me of health, life and energy.

Suffering, however, is not our end. In the most hidden parts of me, as I wrestle through my feelings of loss and pain, I know suffering is truly a beginning. It’s a place where I can begin anew, moving through sadness toward peace and hope. Scripture says, “suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame. (Romans 5:3b-5a)”

Perhaps someday, whenever people think of our family health story, they will find hope. But for now, I am content to know it’s again a season of perseverance; staying steady in the rough times and joyful in the good times. And though every day, I would like to move straight to hope, sometimes the cycle restarts itself at suffering. Try to skip this step and more suffering is likely incurred.

That’s the beginning of our tale that begs to be heard. It’s devoid of details and perhaps lacking in inspiration; it’s not yet bursting with joy and triumph. It lives in the tension between suffering and hope. It teeters on the edge of despair and rushes again toward expectation. And as James Baldwin offers, “it’s the only light we’ve got in all this darkness.” It is how the character, and ultimately the hope, of Jesus is being lived out through us.

The post My Story of Suffering first appeared on Uncommonly Brave.

An Open Letter from a Church Leader with a Rare Disease

I live a double life…as church leader and patient with a rare disease. By day you might find me calling volunteers, meeting with church staff or counseling with someone from the congregation. Because that’s what I do: I’m a church leader. And I look like any other church leader capable of running a church, leading a staff and organizing volunteers. But later, it’s a different story. You can find me tucked away in bed, where I am as I write this, attempting to re-gather my energy for yet another day. You likely don’t understand that this hidden world (the one where I am at my most vulnerable) even exists in my life. Because church leaders must be strong trailblazers and mountain conquerors; they are not sick.

Invisible and undiagnosed illness has been a long journey. It took me over 30 years to get an accurate diagnosis for my rare disease. Unfortunately, that’s normal in the world of rare diseases and is why it’s so important we bring awareness to and fund research for these illnesses. NO ONE should have to go 30 years with doctors doing every test in the book, giving every referral available and then suggesting to their patients their problems are all in their heads. When you decide to spread the word, and create awareness even for a day, you can show you care about me and all those who struggle with rare disease, chronic illness or chronic pain.

My rare disease is life-threatening and progressive. You don’t see me this way, but daily I struggle to stay healthy and even to stay alive. The smallest things can cause me to become ill or can keep me healthy. Because I’ve lived with this illness for so long without a diagnosis, I am very good at hiding my pain and illness. You won’t know if I’m having chest pains. You won’t be able to tell that I feel like I cannot breathe. And you’ll never know about all the time I spend getting sick in the bathroom. You certainly won’t know my symptoms are worse this year than last year. Those things just won’t come up when we talk. But they will always be my lens for my life.

Invisible illness can be very isolating. The hard truth is: my life is probably smaller than yours. I love my job. And I love my family. But that’s about all I have the energy to manage. And someday, I may not even be able to manage those. My best hours of the day are spent serving the church and my husband and children. And I must guard the rest of my time with my life, so that I can keep doing those two things. Having such strict limitations is extremely difficult. But they are real, and they demand to be honored. For if I don’t, then I cannot be strong for anyone, not even myself. So if I seem to disappear before the crowds disperse, turn down an invite or two or take time away from the hubbub, know I’m simply making sure I can be there tomorrow.

The needs of those with chronic illness are woefully under-served. Many of you reading this are probably healthy, and you cannot imagine the realities of living with a chronic illness like I’ve described. You don’t know what it’s like to live with hidden illness, limited energy or isolating choices. Cancer, now that you can understand and have compassion toward. Car accidents, these are straightforward, and you can pray for quick healing. But chronic illness isn’t so easy. How do you even care for someone who faces great challenges every minute of every day? Churches, non-profit organizations and even medical establishments sometimes simply don’t. It’s so much easier to address a short-term need than a set of needs that will never end.

I don’t want to be known as someone who is sick, but I do want to be known. My world is completely defined by my rare disease, and to really know me is to understand and care about this world. What makes my health worse? What makes me better? What can I do just fine for myself? And when might I need help? And…when am I just being stubborn and really need to stop what I’m doing even though I don’t want to bend to this unrelenting illness? Who I am will never be confined by illness, but what I am able to do in this world will absolutely be due to the combined efforts of God working through me, me using the best of my talents and skills and your contributions to expanding my world.

I admit it: I have needs. No one would say I’m a quitter. They probably wouldn’t say I was weak or in need either. That’s the great battle of living with chronic illness and rare disease: I don’t ever want to be seen as needy, but I do have unique needs. As hard as it is to admit, I have unique needs because I am sick. And though I never feel entitled, I sometimes wish people would see that I do need their encouragement, their compassion and even sometimes their gifts or talents added to my life or my family. Someday we will all look back with clarity on how our human economy was designed to work. Right now, it’s not all that clear. I just know the everyday activities you take for granted could each be an individual mountain to me. Sometimes it would simply be nice to have someone blaze the trail for me or with me.

Small acts of kindness can make all the difference to someone with chronic illness. What does any person with chronic illness need in order to have a larger world? Ask them. Every illness is quite different. As a leader in the church, I try hard to practice servant leadership; to lead individuals in the way that serves them best. Sometimes I fail, because I’m quite human. But on the days I get it right, I know I have given each individual just the amount of direction, freedom and encouragement that is just right for them. You can do this for people like me who are chronically ill too: know their story and then come alongside with just the right amount of acknowledgement, assistance and encouragement. Your compassion matters, because every bit of energy you save or give to someone with chronic illness is energy they can use to make their shrinking worlds larger once more. I know it matters to me.

My name is Sandy Johnson, and I have mast cell disease.

The post An Open Letter from a Church Leader with a Rare Disease (In Honor of Rare Disease Day) first appeared on Uncommonly Brave.

Sometimes I feel useless when my chronic illness flares up. Most people that know me would be partly surprised with this statement. But then if they stopped to think about how activistic I can be, they’d see the frustration in needing to stop and rest…to do less.

To be clear, I do NOT like doing less. I would rather do more. I’d rather go, go, go. Not stop, slow down or rest.

I’ve heard from quite a few people who live with chronic illness that they feel the same way. As their productivity goes down, their frustration goes up. And an impatience to just feel better sets in. But alas, chronic illness has a way of telling your body that rest is a priority. And too, importantly, I’ve learned if I rest when my body asks for it, I recover my strength so much faster!

So, I do. I stop. I slow down. I rest. And then I feel…well, useless.

After participating in this cycle for far too long, I decided to make a list. Ever heard of the idea of a “bucket list?” The term that became popularized through the cinema represents a list of those things you’d like to do someday…before you “kick the bucket.” I’m still working on my life bucket list. But I’ve got my bedside bucket list further along.

Sometimes when I’m feeling bad, I’m too sick to check anything off my bedside bucket list. But other days, I spend that forced time in bed or at home to make a difference. I can always send up a prayer. And I can encourage people on Facebook or via email. I can spend time with my kids, or watch a movie with my husband. I can even check the family finances or research something I’m interested in.

I’m sure you’ve got many ways of dealing with your forced down time. What are your favorites? What’s on your chronic illness bedside bucket list?

The post 5 Ways You Can Still Make A Difference When You Need to Lie Low first appeared on Uncommonly Brave.

I live with chronic and invisible illness…a rare, potentially life-threatening, disease. And I live life to the full. I’m also the mother of two chronically ill teenage children and the wife to one amazing caregiver! Medical talk and paraphernalia is a way of life around our home. Yet illness is not the center of our home, because we are learning to become uncommonly brave.

This is my personal blog, designed to combine optimistic realism and experience with solid research and inspiration. This is my humble way of contributing something of value to those who make up the chronic illness, rare illness, undiagnosed illness, invisible illness and chronic pain community.

Whether you’re chronically ill, are the parent of a chronically ill child or act as a caregiver to someone chronically ill, then this space is for you. Over time I trust we will interact and share the best ideas for facing illness with uncommon strength and courage.

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MY BIOGRAPHY

For thirty years, I chased a medical diagnosis. No one knew quite what to make of a woman with seemingly random symptoms that migrated from one bodily system to another. How could flushing, headaches, itching skin, nausea, heartburn, GI distress, breathing difficulties, internal pain, full body pain and chest pain possibly be related…especially when they don’t occur all at once. But these things are related for me. They’re symptoms of Mast Cell Disease, an illness in which my mast cells act badly.

Who knows, in twenty years perhaps every physician will understand and be aware of Mast Cell Activation Disorder. At present, however, most physicians have not heard of this rare illness or have an understanding of how to treat it. For me, it has been both chronic and progressive. Each year has been a bit more difficult than the one prior. My care team at the Mayo Clinic, though, is excellent, and I am grateful for their expertise. In addition, I’m so thankful for the ongoing work of The Mastocytosis Society and for each and every member of the masto community who has helped me understand how to have the best life possible living as a mast cell patient.

My two teenage children have a combination of illnesses, including Ehlers Danlos Syndrome Hyper-mobility Type, Postural Orthostatic Tachycardia Syndrome (P.O.T.S.), Traumatic Brain Injury, ADHD, Allergies and Asthma as well as Prenatal Drug Exposure (birth parent). They both attend school regularly (one with an IEP and one with a 504 plan) as well as participate in extra-curricular activities of their (and their doctor’s) choosing. We are also thankful for the pediatric services of the Mayo Clinic, and we’d like to say a huge shout-out to the staff, donors and volunteers of the Ronald McDonald House in Rochester, MN for their work serving families like ours over the years!

As far as professionally, I have worked in the contemporary Christian church world for more than twenty years. I have undergraduate degrees in Bible and in English from Northwestern College (now known as the University of Northwestern), and a graduate degree in Organizational Leadership from Regent University. I’ve worked for Willow Creek Community Church, Kensington Church, Prairie Lakes Church and Pulpit Rock Church over the past many years. I love God, and I love leadership.

DISCLAIMER

We’re not doctors! Information posted here should not be considered medical advice. It does not replace consultation with physicians or specialists. While we may provide research, advice and encouragement, you must make your own well-informed choices. Links to other sites are provided as a courtesy, but do not constitute full endorsement of those sites by UncommonlyBrave.com or me; we are not responsible for their content.

Additionally, opinions expressed here do not necessarily represent those of current or future employers. I make no representations as to accuracy, completeness, currentness, suitability, or validity of any information on this blog and will not be liable for any errors, omissions, or delays in this information or any losses, injuries or damages arising from its use.

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