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.

Please note: I reserve the right to delete comments that are offensive or off-topic.

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

  1. Thank you so much for posting this! I serve in the church and wish to be a church leader when I’m older. I’m 17 and have a chronic illness. I can relate to this post and now I see that I’m not the only one who wishes to be a servant leader while battling chronic illness. You understand what it’s like! Thank you for being such an inspiration! God Bless!

  2. Sandy, as a Minister your beautifully written letter really hit home. For years I refused to file for Disability because I didn’t want to feel like I was giving into the disease or it was winning. I buried myself in my work, hiding from everyone (other than family and closest personal friends) the fact that I had SM. As a leader of the Church it is so hard to wrap our heads around these limitations. I kept telling myself that God put a calling on my heart and therefore I could not say NO. EVER! I had to be at the ready 24/7 for everyone else because that was more important than taking care of myself. It didn’t make sense to me that God would call me to lead His people and then make me unable to do it. Another dear friend of mine, also a Minister, said that even though I also practice servant leadership, part of Ministry is also allowing others to minister to me, so they can increase their own awareness of servitude. After I nearly died again and was bedridden for months, I had to tell people and cut back. Eventually filing DIS. The congregation had a healing service for me and have continued to lift me in prayerful support. Everything you wrote I could personally relate to. Not wanting to look sick or be defined by my disease. It’s a real learning curve. I still do occassional weddings, memorials, baptisms etc. But I have my Study set up at home now and work on a very limited basis. I’ve had to shift the focus of my vocation to be one more centered on prayer snd encouragement for others and writing. Still can be emotional but much less physically taxing…even in the worst pain I can still pray! Thank you for your honest and heartfelt letter. I have seen you on the Masto site but didnt know you were also a Minister. God bless you for pouring your heart out to help raise awareness. At least we know there will be a world free of pain for us in the NEXT life! Hallelujah!

  3. Very well written, Sandy. I would love to share it with my church family. You said how I feel and think. Thank you.

  4. You have opened my world just a bit more for the better today. Not to minimize what you’ve written because I know for sure God rates this as a masterpiece. I myself am tired of faking it, being so exhausted while you’re tucked in bed to regroup that all you can do is cry. And then see that next doctor that suggests perhaps you need a psychiatric work wup. Probably truth but not because diagnosis is incorrect but instead because the medical world would rather put you behind a screen. No matter what the circumstances of your daily duties, be they Mom, Pastor, gardener, kennel keeper or house keeper. The exhaustion, depression, pretending, hiding from everyone including coworkers, family, friends and doctors is nearly beyond human capabilities. Thank you and bless you.

  5. It is so hard for people to understand these issues unless they have been there. I have had two chronic debilitating illnesses for 15 years and now diagnosed with LEMS, a rare disease.
    I used to be a church leader in several ministries, a full time volunteer and loved my church dearly. Since becoming too ill to attend church but a couple of times a year, my church has forgotten who I am. When I go to church, I am attacked and interrogated by the same few people who tell me how good I look and make comments about us not being there. It is so sad. I miss corporate worship and I miss the people connections. I have talked to an elder and a pastor but have pretty much been ignored. I’m not bitter, just sad. I would love to find small ways to make contributions but no one is listening to me….

  6. I am glad I had a chance to read your letter. If there is anything I can do, personally, to make you more comfortable in this world, please let me know. I live in Lilburn, Georgia but I know I can do something for you.
    My son has chronic depression and he lives every day as if it may be his last. So do I. It is devastating and is something that no one can see. he looks healthy and somewhat happy.

    take care and please let me know how I can be of service to you. Love, your Sister in Christ

  7. Oh, Lord, this is the same disease my younger brother has! I hope you have access to support organizations for individuals with mast cell disease, because it can be so devastating. My brother has had it for over 20 years, and while he is still medically stable, most of his life is spent managing the disease. He tells people he has leukemia, which is not far off the mark, since the diseases are so similar and people understand how demanding leukemia would be. I worry about him tremendously, because of the demands his condition present for rest frequently and for avoiding certain situations.

    If you don’t know anyone with this disease, I’m pretty sure my brother would be happy to talk with you over the phone or chat via email. Please let me know if this would be helpful. And…for what this is worth…I really do understand. My 2 brothers and I all three have different rare diseases that are apparently unrelated to each other. We all have to work extra hard to manage ourselves as well as our workload and family lives. I’m glad, though, that we have each other.

    Please take care and let me know if you would like to be in contact with my brother.

    Best regards,

    Leslie

  8. As the mother of a mast-cell-disorder sufferer (my darling daughter, who is a young wife and mother to a three-year-old boy), I have learnt so much watching her daily battle with just living. (It is an exceptionally cruel and isolating disorder.) And I have been really hurt for her as friends and family members have fallen away, got tired of not hearing the good news that they want (healing!), don’t contact her or visit anymore, and (especially) imply that if she just tried a bit harder she could do x, y or z, etc.. Her faith in God has remained steadfast throughout, and yes, she has grown in wisdom, but she longs for the good health to do normal things like take her child to school, go out to the shops or tea with friends, have people over for meals, share an outing with her husband, go on holiday like everyone else. It is a deep pain to watch and know there is very little I can do about this, as I live far from her too. And I continue to hope that the church, her church, will catch the vision of doing for her what they would do for Jesus.

  9. Thank you for sharing your story! I too have been chronically ill for quite some time being thought of as a hypochondriac at times. Doctors visits, expensive tests that led to nothing! Finally…an anaphylactic episode led me to an allergist. She ran blood test after blood test with no answers. She did not give up! One final test found that my histamine levels were very high. We are still figuring out what my triggers are, but have some hope now from people like you.

    You are an inspiration to all that suffer from Mast Cell.

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