How I Came to Love the Limits of My Rare Disease

The more you try to avoid suffering, the more you suffer...

I know I’m safer inside, tucked away behind the drapes and in the shadows. My head understands when I venture outside I am vulnerable…that the sun itself is my nemesis. My body clearly protests even a single moment spent in the sun and heat. And though my heart doesn’t want to believe, it’s undeniable: I am “allergic” to the sun.

The specifics of my rare illness don’t matter too much, but if you must know, look up mast cell disease. It’s like being allergic to the world (to sun, to heat, to cold, to smells, to food, to stress, to the environment) without having a true allergy. My body decides without warning, or sometimes without even provocation, to dump the contents of my mast cells. I describe it as feeling like your own body is poisoning you from the inside out. In our rare illness group, we call these mast cell attacks. And the scary part is with every attack I risk life-threatening anaphylaxis.

So I stay out of the sun.

Everyone who lives with chronic illness or rare disease must face limitations. We face the loss of what our lives used to be (or could have been), and we rearrange our lives because of illness until we find a new version of normal. Whether we are dragged along this path of limits kicking and screaming or we step methodically and peacefully onto it is up to us. You and I get to decide how we want to deal with the limits imposed by our chronic illnesses.

Personally, I take a lot of medication to be able to function, and I’m very grateful I have a few somewhat helpful treatment options. But the very best treatment for my rare disease, is to avoid having my mast cells set off; I must cut out ANYTHING that could cause an attack. I must impose strict limits on my life.

At first imposing limits was loss. I had to give up so much in service of an illness I didn’t choose. And when a new symptom claims yet another piece of normal, it is still loss. And loss causes me pain.

Yet, staying out of the sun makes more sense. A highly specific diet makes me feel better. A warmer climate causes me less pain. Temperature control (i.e. air-conditioning) offers relief. My choices to limit my life bring me more: more freedom and more health, not less.

That’s how I came to love the limits of my rare disease; I discovered limits CAN offer freedom. Instead of fighting to maintain my life exactly the way it was and finding myself worse for the battle, my power is restored when I make choices that increase my well-being.

Do I fight for some things? YES! I fight to attend graduations, move my kid into college, volunteer at my favorite leadership conference, to stay working and some nights to just sit up at the dinner table with the family when my body is begging to lie down. Those are the hills I die on today.

Yet peacefully choosing limits can be more liberating than fighting hard any day, for the war with chronic illness will be won through wise choices and acts, not simply brute force and wishful thinking. What I’ve given up in limiting my everyday life is nothing compared with what I have gained from the freedom to stay a tiny bit healthier.

The sun, as it peeks through the clouds or bounces off the lake, is still amazing. I just choose to enjoy it from the safety of my bedroom window.

The Dark Side of Rare Disease

In honor of Rare Disease Day 2016

The Dark Side of Rare Disease

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.



My Story of Suffering

The Tale of How We Suffer

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.

An Open Letter from a Church Leader with a Rare Disease (In Honor of Rare Disease Day)

An Open Letter

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.

Check out this video. I’ve not met Kayla, her parents or her coach. But the story shared about her determination in the face of chronic illness speaks volumes. As you watch, notice three things:

  1. She chooses to live and run with determination.
  2. Those around her hold her accountable for her own goals.
  3. Support, of just the right kind and amount, is INVALUABLE.

Whether you’re a patient with chronic illness, a family member or a supportive other, you can learn much from this story! Chronic illness can stop you in your tracks, or it can push you to the extreme. I’d rather choose to live strongly than to cave under the weight of illness.

Four Ways to Create Your Own Best Chronic Illness Life

My goal is to create a life I don't need a vacation from.

I’m still learning about living life with a chronic illness. I’ve been sick all my life, but it’s not like a person can master how to live gracefully and courageously when they’re fighting with a body that doesn’t seem to want to take orders. I don’t have it all figured out, but every day I work hard to become uncommonly brave: to live my life under my terms with a sophisticated peace that conveys I am the author of my own experience.

Want to create your own best chronic illness life? Where do you even start? Here are a few thoughts to get you going:

  1. Your nest. Think about your home, your bedroom or the place you spend the most time when you’re feeling ill or having a bad day. This is a great place to begin. What would help you feel more comfortable here? Do you need extra pillows, a special chair or a bedside reading nook to create a space that feels warm and inviting? Or do you need a desk where you can be productive for a few minutes at a time? Make plans to redesign your space to make it work for you and your unique needs and desires.
  2. Your free time. Think about what you tend to do with your free time. Maybe you already take long walks on the beach or in the woods. Maybe you love window shopping or crafting gifts for others. Whatever it is that fills you up, do more of this! When we’re sick, we tend to stop doing the very activities that might distract us from our illness and bring us internal strength. If you’ve stopped doing these things, start today. Even a few minutes of soul-filling activity is worth it! And if you need help, ask for it. Maybe you can’t walk through the woods, but you could use a nice drive to a park. Make it happen today.
  3. Your work time. Think about how you spend your hours contributing to the family income. If you don’t work outside the home, think about the activities you do inside the home. We all spend a lot of time at our workplace or working at home. Do what you can to bring life and joy to this situation! Pin up pictures of things you care about in a work locker or in your cubicle. Add color to  your office or computer area. Find a few favorite restaurants that deliver. Block out time to have lunch with a friend. Start simple, but make this area and the time you spend in it something you look forward to. Sometimes even the simplest things can make a huge difference.
  4. Your life. Think big! Do the suggestions above seem too small? Then think bigger. Maybe you don’t need a few minor improvements to create a life you love. Maybe you need radical change. Of course, I’m not advocating you make reckless changes to your life (like quitting your job without another income or moving to a place you have no support system developed). But if you’re really feeling like your life has become unbearable, it might be time for a major adjustment. Maybe it’s time to gather a few friends, share your dreams and talk about how you might achieve your goals, despite your illness. It’s never to late to start again.

Life is just plain difficult when you’re living with a chronic illness, chronic pain or undiagnosed illness. But though your body might rebel, you still have the ability to affect positive change in your life. Why not start now?

The Value of a Moment

The Value of a Moment

Having a chronic illness can sometimes take your breath away. Literally. So it’s hard to remember that life is life is happening all around you while you’re busy struggling for air.

Whether you’re reading that figuratively or literally, when you have a chronic illness or chronic pain it’s important to remember to stop and notice the moments. Good days happen. Bad days happen. And both are chock full of moments that matter.

Here are a few of my moments that mattered this week:

  • My prayers for an appointment change for the doctor were answered!
  • My daughter submitted her college application and the art portfolio she’s been working hard at all year.
  • My AHDH son had a great victory at school.
  • We’re set to have family time tomorrow morning, and it looks like all is well. (Sometimes illness interrupts this, so fingers crossed and prayers said!)
  • I was able to accomplish what I needed to at work prepping to be away for a bit while I recover from surgery.

All in all, it was a good week. And it would be super easy to skip right through all the moments that make up life. But let’s not do that. Take time to launch some mini-celebrations. Why not have a brownie or glass of lemonade to celebrate?

In my list, I didn’t include a few other important moments that aren’t exactly celebrations. Like a high school friend lost her husband unexpectedly this week. And we discovered a hidden problem that needs attention. Those moments matter too. They demand a response.

Stop and notice. Respond with your whole self. Just because you’re sick or in pain doesn’t mean you cannot fully participate in life! Celebrate fully. Respond gently. And notice the moments life creates!

My Chronic Illness Bucket List

A Goal is a Dream with a Plan and a Deadline

We all have dreams: things we want to do, places we’d like to go, people we’d like to become. Humanity has been gifted with the inordinate capacity to dream about becoming something more than they already are. People who deal with chronic illness share in this too. We’re not as discontent as we might sometimes feel; instead sometimes we’re simply wrestling with the craving to reach out and touch the stars, to experience life to the fullest.

Dreams are amazing. But if our lives are only spent dreaming and are not also spent doing, we will end our existence with a pile of regret. Anyone with chronic illness familiar with regret? Most of us are likely too cozy with this feeling. So this year, I challenge you to make a bucket list. You know, that list of dreams you want to accomplish before you “kick the bucket” and you no longer have the chance. Why not take a few minutes and think about what’s really important to you? (Can’t leave your bed? Check out my post about a bedside bucket list.)

Personally, I’ve always been quite goal oriented. It’s super important to me that people in my family, on my work team, and in my life are all headed in the same direction, working together to achieve the same goals. And every year I set personal goals. Some of them are short term desires, and a few are long-term dreams. I find what’s written down and reviewed regularly will receive a ton more attention that what’s simply floating around in my mind.

To be honest, though, I’ve never created a dream bucket list. I’ve had ideas of things that are important to me, but when I got sicker, I sort of stopped dreaming. And a bucket list seemed extravagant to me. For a while, I stopped doing too; I only had the energy to attend to the “must do” list. Certainly anyone with chronic illness can understand what that’s like. Some days, some weeks or some years are simply difficult, to say the least.

But now…now it’s time…time to fight for my dreams.

Today, I start my bucket list. I’m going big.

  • Item #1: Visit Paris. It’s always been my dream to visit France. Time to make a plan?
  • Item #2: Own a house on a lake. Well, at least on water. This one might happen soon. It might be a pond, but I’ll take it. It’s so exciting!
  • Item #3: Become a magazine editor. Wow. That one just happened. I’m the new editor for the Mastocytosis Chronicles. One edition down, lots more to go.
  • Item #4: I don’t know…

My personal assignment to myself: finish my bucket list. Dare to dream. Chronic illness is NOT an excuse for giving up on the human search for life at its fullest!