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.