chronic illness

I am writing a book.

I recently announced on Instagram I have started writing my first book. I waited for months to finally announce it publicly, trying the terror of uttering the words, "I'm writing a book" on for size with my family and friends first. For the record, both saying and writing the words still feels scary.

Suffering has been a larger part of my life than I ever could have imagined. As most of you know, I became ill at 2o years old as a junior in college. Though illness has not been the only thing in my life since then, it has dramatically shaped and formed my experience for nearly nine years. 

kjbook1.jpg

A story about illness sounds depressing, right? But a story about the multiplying joy of Hope in the mire of suffering—that’s a story I cannot keep to myself.

In a culture allergic to grief, we are often loathe to find hope articulated honestly enough to fit the contours of our private suffering. But the longer I live with pain and the comfort of knowing Jesus, the more I know I have to share my story as boldly as I am able. 

I hope to weave together three important narratives to empower others to experience joy in their own suffering: 

  1. My experience of chronic illness illustrates the power of relationships to mediate meaning and hope in the midst of suffering. 
  2. As a therapist, I find my experience of transformative relationships echoed in the insights of interpersonal neurobiology: our brains thrive most in empathic, secure relationships, so much so that our brains retain the ability to heal from trauma and pain in response to relational attunement. 
  3. My story and the insights of interpersonal neurobiology are ultimately brushstrokes of the larger picture of God's mysterious love toward humanity in the person of Jesus Christ. Within God's Story, our stories of suffering gain unparalleled meaning and life-changing hope. 

Suffering can catalyze joy. And it happens through relationships. I hope and pray my story touches your own, bringing possibility alongside your great sorrow. 

Realistically, writing a book on suffering while continuing to suffer with illness and pain means this book could take a long time to write. But I will press on. I'm closer to the beginning than end of this process, but I am glad to have started and to be including you.

Your pain, whatever its source, moves me. And the joy of Christ propels me. I pray we can find and dwell in Joy, and that my writing in some small way might draw us further into the love of the God who is coming again to make all things new.

Physician-Triggered PTSD, Grief, and the Joy of Looking to Christ

My body has been through so much in the past few weeks. I've wept and cried in anguish, but I've also sung for joy. I've enjoyed the heights of paddleboarding on mountain lakes and journeyed the depths of a pain which chained me to my couch. 

I've experienced two disease flares, one of which was excruciating to the point of tears, two chemo injections, one chemo infusion, my damn period, a pelvis x-ray, and a daunting rheumatology appointment. And that's just the disease stuff.

Yesterday my rheumatologist quelled some fears regarding my diagnosis and future treatment. To understand the import of said conversation, you have to know I have what one might, only half-facetiously, refer to as "physician-triggered post-traumatic stress disorder." (PTSD)* Anxiety courses through my body as I face doctors appointments. Where I can generally easily access calm, I am instead in fight-or-flight mode. (If you ask my husband, he'll tell you it's mostly fight-mode. I can get real feisty when it comes to protecting my health with medical professionals.) I have been treated horrendously by doctors in the past, and I resultantly wear a cloak of mistrust to every medical appointment. 

Will you harm me? Will you question the veracity of the pain which has so rocked my life? Will you threaten to take away the treatments which are the primary thing standing between me and disability?

My cloak of mistrust feels like a necessary protection after several soul-killing surprise verbal attacks by arrogant doctors. I've been blindsided one too many times and no longer enter medical appointments with any assumed safety.

And yet, not all doctors are asswipes. Some actually listen. Really, many doctors truly listen and care. In my 8.5 years of being sick, I have probably seen over 50 doctors. Less than 10 have been total jerks. Fewer than 5 have damaged my soul. Funny, isn't it, how a semi-small handful of traumatic experiences can affect your life?

I am especially able to take off my cloak of mistrust if I am accompanied to appointments by a supportive person. In most cases, this is my spouse. Sadly, because medical appointments often take up a significant amount of time in any given month, I have grown accustomed to attending them alone. In many ways, my posture toward medical appointments is a emblematic of a larger attitude toward myself, others, and even God in light of long-term illness. Doctor's appointments are one of the hardest places to practice what I preach about community. It's much easier, in a sense, to go by myself than to inconvenience others to come to mid-day, often long, appointments. However, in going alone, I leave myself unnecessarily vulnerable. What seems convenient is actually, in most cases, unwise and unkind toward my sensitive, somewhat-traumatized soul. 

Yesterday, because my husband accompanied me, I was able to take off my garment of mistrust. And, amazingly, my doctor showed himself to be trustworthy.

Today, I am carrying both gratefulness and grief from yesterday's appointment. I'm in awe that my rheumatologist cares about my life and believes my pain. But I'm also grieving the reality that I may have some additional health conditions impacting both my quality of life and future plans. 

I grieve for my body, for the pain, suspicion, and anguish she has had to endure. I grieve for the losses, the difficulties, and the harrowing hazards my body has and does face. I grieve for her and simultaneously marvel at her strength.

Facing my physical fragility and fortitude draws my eyes to Jesus. My body of pain illumines His Body and the inexplicable pain He endured in His life and death. Cosmically, Jesus held my pain in His body. In his pierced hands and side, the offending wrongness of chronic illness as a result of the Fall was forever atoned. 

My body has been through a lot in the past few weeks. But only in Jesus' Body is there enough space to hold the weight of the grief and joy in my life. And there is room for yours, too.

Look to His Body; look to His suffering. Find peace in the mystery that your pain is known, carried, and forever conquered in the death and resurrection of Jesus Christ. 


*No, I do not have a PTSD diagnosis. Yes, I do respect the seriousness of such a label. And yes, I do genuinely believe I experience serious symptoms of trauma when it comes to some of my medical experiences.
If you are concerned about your own experience of trauma, I highly recommend you seek the advice of a medical professional, particularly a counselor. I offer Denver-based counseling services and would love to support you in the hard work of living with illness or suffering of any kind. 

I have calmed and quieted my soul.

Kathleen Norris writes, “When I stop running from my life, I can return to living it, willing to be present again, in the present moment.” (p. 18, Acedia & me)

Alone in a tunnel of noise, I called out to God. Surrounded by the cacophony of the MRI machine, I prayed. Though I had mentally distanced myself from my illness for months, here I was, still intimately in need of God’s presence in sickness. 

Even eight years into this mess of sickness, I struggle to know where to place illness in relation to myself. I can stop describing it, try to focus my energy elsewhere, and quietly move forward. Yet, it’s part of the atoms that make up my life.

Some spiritual guides of mine and my husband’s have written, “…whatever I disown winds up controlling me.” (Rich Plass & Jim Cofield)

As much as I would like to set illness to the side, it is part of my life.

There is a fine line between being more than your suffering and disowning your story. 

Just as the screeches and beeps of an MRI overwhelm, we are each engulfed in a world of noise.

After a long period of silence publicly on my blog, it has been difficult to find words. At first in the past several months I wanted to distance myself from the noise of the writing world, in silence to say that I didn’t have to speak. It was liberating to acknowledge I have a voice but that I can choose to use it when I want.

But over time, not writing did me a disservice. Writing has long been a means of my integration—a process that brings perspective. Writing grounds my place in this liminal life. In words, I can hold my life with open hands before God. Without the discipline of writing, though, I tend to listen to noise instead of focusing on what matters. 

As I come out of a long period of quiet, I’m reminded of the words of the Psalmist:

O LORD, my heart is not lifted up;
my eyes are not raised too high;
I do not occupy myself with things
too great and too marvelous for me.
But I have calmed and quieted my soul,
like a weaned child with its mother;
like a weaned child is my soul within me.
O Israel, hope in the LORD
from this time forth and forevermore.
— Psalm 131

 

I’ve calmed and quieted my soul. And in the quiet, I’ve learned I need to speak, not to be heard, but to walk the fine line of owning my story. 

How do you own your story? None of us can do it alone, and none of us can do it without work. Perhaps what we need most is a way to listen, discipline that parses the noise from the substance, that allows us to see our one, real life and God as its good Author.

So I will listen, and I will write.

Radio Interview on "The Truth About Living with an Invisible Illness"

Today my radio interview with Bill Feltner on "His People" was broadcast on the Pilgrim Radio Network across five states and online. It was such a joy to share my story on a new platform. I'm learning that public speaking is a place where my love for the gospel, hope in suffering, and desire for others to know that Hope can come out in an incredibly powerful and unique way. Writing will always be my first love, but speaking is certainly on the list. I'm now actively praying for more speaking opportunities to share my paradoxical story of how God can make suffering a place of joy. (And if you want to discuss a speaking opportunity you can fill out a request form here!)

Today's interview was on my Christianity Today article entitled, "The Truth About Living with an Invisible Illness." In the interview Bill asked questions about my "invisible" disease (Ankylosing Spondylitis), what life has been like since I got sick, how I've experienced stigma around my illness (but also beautiful community!), and what it's like to be a chronically ill graduate student. Here's the audio of the broadcast:

The Truth About Living with an Invisible Illness--on Christianity Today

Writing over at Christianity Today's Her.meneutics site today. Here is an excerpt of my article:

I forced myself to go church because I knew it’d be good for me, for my soul. But now I can’t stop fidgeting from the pain. Why aren’t these pews padded? My husband gently rubs my neck as I roll out my stiff ankles. My shuffling around is distracting the people sitting behind me.

I hadn’t left the house all weekend—too tired, too dizzy, too uncomfortable to do much at all. But I know my body needs God and his body. I want to be in his house to feel his presence in my pain.

Read the rest of this article on Christianity Today.


To the Friends of those with Chronic Illnesses: You are a Gift

I’m convinced that authentic soul friendship is hard thing to do at any age and in any season. As a chronically ill young woman, it’s easy to think it’s an illness problem. But my hunch is that building and maintaining deep friendships is a task almost all humans struggle with on some level. We were created for connection but often don’t know how to accomplish what we seek. From their earliest weeks and months babies recognize the voice of their mother and mimic the facial expressions of the people around them. We are hard-wired for relationship.

But relationship eludes us. Connection is never quite what we long for. Our moments of deep connection are brilliant but fleeting, moments instead of constants in our lives. First Aid Kit describes the yearning for this type of beauty to stay constant in their title track “Stay Gold”:

But just as the moon it shines straight
So dawn goes down today
No gold can stay
No gold can stay

What if our hard work ends in despair?
What if the road won’t take me there?
Oh, I wish, for once, we could stay gold

What if to love and be loved’s not enough?
What if I fall and can’t bear to get up?
Oh, I wish, for once, we could stay gold
We could stay gold
— First Aid Kit, "Stay Gold"

In the past couple weeks I interviewed a few of my friends about what it’s like to be a friend to someone with a chronic illness. As I reflected on their words and friendship more generally, I realized that friendship is difficult for all of us humans. We’re like moths to a flame, drawn to the glow of intimacy. But we also know that fire burns. The small pains of friendship and the larger wounds of rejection and abandonment keep us from moving toward one another.

The presence of chronic illness in a friendship can make our frustrations, pains, and wounds more noticeable. So today, I write for the friends of those with chronic illness, the caregivers, the patient souls who feel simultaneously disappointed by our fickleness and drawn to us in love. The chronic illness community too often gives you a bad rap, focusing on your flaws instead of your love. Not today, my friends. Today, you are my teachers.

So what’s it like to be a friend to someone who is chronically ill?

On Acceptance:

Bess shared that the hardest thing about being a friend to someone who is chronically ill has been accepting she is not going to understand what I go through completely. Friends want to understand each other. But there is an element to chronic illness someone can never grasp unless they have been chronically ill. Even my husband will never fully understand what my experience is like. This fact can be incredibly isolating for both the sick individual and our friends. However, when both parties in a relationship accept our different experiences for what they are, our differences can become places of respect and cherishing rather than only frustration and pain. Friends, as a chronically ill woman I release you from the unfair expectation that you must understand my experience of being sick.

On Fixing and the Discomfort of Seeing Us Sick:

Bess also shared it’s been difficult to stop responding to me in fixing mode. She said, “Fixing is the opposite of intimacy. It’s harder to be in the pain with someone than to fix it.” Let’s be honest with each other, it’s wildly uncomfortable to see someone you love in pain. The urge to fix, to alleviate one’s pain, comes out of this place of discomfort. Friends, we have to become more comfortable with discomfort in order to keep knowing one another in the presence of chronic illness. 

@@We have to be more comfortable w discomfort in the presence of chronic illness in friendship.@@

Being with a friend who is sick is difficult for both parties, especially when a friend has to accept practical help because of their illness. Michelle and I reminisced about when we were college roommates and I often needed help from her to cut my food, brush my hair, and drive across campus or town. She shared, “It’s humbling for both people. By no means is it a chore. But I’ve often thought, do they know this is hard for me too?” It was good for me to remember that it’s hard for my friends to see me as sick and to offer help that they know I would rather not receive because of my own stubborn pride. It’s easy for those in the chronic illness community to focus on how difficult our experience is. But, friends, hear that I know this is hard, humbling, and heartbreaking for you, too. 

On Unpredictability:

If you are reading this, you probably already know that being a friend with someone with a chronic illness means your friendship can be pretty unpredictable. Some weeks I can spend a lot of time with friends and other weeks I’m homebound. Canceled plans and grouchy moods can leave my friends feeling like they are relating to a ticking time-bomb. “It’s a push and pull of how I will be received…It takes self-confidence to not think I am being rejected or that I’m not meeting your needs,” Michelle shared. I’ve gathered it takes some thick skin to be a true friend to someone with a chronic illness. Friends have put up with a lot from me—bitchy words in frustration, unpredictable moods, pushing them away when I’m not doing well, and the general flux of my rapidly changing capacity to be together. Friends, sometimes your friend who is chronically ill feels so overshadowed by her physical pain that she can’t respond to you as 100% herself. Your friendship helps me keep being me. Your friendship enables me to see past the pain, to remember who Katie Jo is. Let’s keep giving each other grace, because, unfortunately, that damn unpredictability isn’t going anywhere. 

On the Gifts of Friendship in the Presence of Illness:

When you can’t always get out of your bed because of illness, you begin to soak up the joy of the present moments when you are able to be outside, work, or spend time with a friend. I think the posture of immediacy my disease has forced into my soul is a gift I bring my friends. Bess shared the thing she loves most about being a friend to someone with a chronic illness is the push to be present, to enjoy what’s right here right now. Appreciating the present moment helps us embrace our true selves. Bess paid me what might be the highest compliment of my life: “You push me to accept my true self. I think it’s because you are so often pushed out of your comfort zone because of your chronic illness, and then you push others to do the same. You motivate everyone around you to be more fully themselves.” That might be part of the rub with your friends who are chronically ill, too. It’s scary to have to face our true selves! The burgeoning and illuminating sense of presence we who are chronically ill bring to our lives can be a bit overwhelming. Our sickness makes us face things about ourselves we would rather not face. And we know it highlights similar facets of your lives as well. Friends, let’s soak up the joy together when we get to share coffee, sit in the sun, walk in a park, or simply sit together on a couch. Let’s share the joy of “being” together as we each more fully become who we are.

Ultimately, you are a gift to your friend who is chronically ill.

You are a gift not simply for the help you offer and the comfort you bring. You are gift because of who you are, because in you I see the meaning of love, of holiness, of truth lived out through the dark places of life. Your faithful friendship helps me know that God will faithfully raise me out of this body touched by sickness. Friends, in knowing you I better know the love of the God who created us, of the victory of Christ’s love that conquers sickness and death in resurrection. You teach me to hope, to love, and to just be. Friends, please know that you are a treasure and gift in my life.    

Isolation Sucks: Teach Your Friends to Support You in Autoimmune Disease

Today is World Autoimmune Arthritis Day--a chance to raise awareness for how autoimmune arthritis affects the lives of millions of patients worldwide, including their friendships. Have you lost friends since getting sick with your autoimmune disease? Do you find yourself lonely as you face daily pain, fatigue, and disability? Yeah, me too...

When autoimmune disease often keeps you stuck in bed, on the couch, or unable to do much after you spend all your energy at work, it’s easy to feel like building and maintaining friendships are impossible tasks. I know my friends get sick of how often I cancel our plans. It’s been happening for seven years… And chronic illness is so taboo in our culture. Everyone lives as though people should just get well like you recover from a cold or the Flu. But with diseases like ours (Ankylosing Spondylitis, Lupus, Rheumatoid Arthritis, and Chronic Fatigue Syndrome, to name a few!), we often don’t get well. We keep struggling with daily pain and our bodies often keep degenerating in their slow, excruciating march toward death. Frankly, you and I are visual reminders to the people in our lives that they too are not in control of their health or future. The fact that we are sick makes both us and others uncomfortable! 

In the seven years I’ve dealt with autoimmune arthritis I have seen countless others decide to relegate their disease to a dark corner of their life. It’s a place only they themselves and maybe one other person can visit.

And I get it.

Let’s be honest, it is often embarrassing to be sick and let others see us this way. It’s uncomfortable for me to allow others to see me hunched over, shuffling across my school campus like a 90 year old (I’m 27); or doubled over in pain from chronic diarrhea. Or running to the bathroom every hour from persistent nausea. Or just mentally fried from being in so much damn pain. The invisible reality we carry often keeps us from engaging with others who are well. 

But what if it didn’t have to? What if we could still have friends? What if you could take your illness out of a dark corner and let a friend tenderly bear your pain with you? 

Friends, I believe friendship in the presence of chronic illness is possible and that our joy in life depends on it. You were never meant to carry this burden alone.

@@You were never meant to carry this burden alone. Friendship w chronic illness is possible.@@

I’ll be the first to tell you that letting others into my pain is scary. Letting someone see me bawling over not being able to walk across the room or how I hate what steroids have done to my body is pretty much the definition of vulnerable. Finding friends who are safe to invite into our vulnerable spaces is hard and courageous work. But it’s also been the most meaningful work of my life with the highest pay-off in peace and joy.

How can you move away from isolation and toward community when you have a chronic illness?

  1. Accept the fact that no one else can fully understand what it’s like to be uniquely you with your distinctive experience of illness. We each have our own story, and even others who are chronically ill might not totally “get” your experience. Owning that your experience and life are yours alone can free you from expecting others to understand something they simply can’t and won’t.
  2. Refute the lie that no one else can meet your needs for intimacy or friendship in your sickness. It’s so easy to think that since no one can fully understand what you experience, then others won’t be able to support you in that experience. In order to choose friendship, you have to actively discredit the lie that others won’t be able to support you like you really need. It’s often not that others can’t support us, it’s that they don’t know how!
  3. Begin (and keep!) teaching your friends how to support you in your illness. Others typically won’t know how to support you without your help. I know, it feels like others should just know how to be there for you. They don’t. They feel confused about how to be our friends. They feel helpless and frustrated not knowing how to interact with us in our sickness. 

So how do you teach your friends to support you? Some ideas:

  • Talk about your disease with your friends (or potential friends). Share with them what it is, how it affects your body, and how you are afraid it might impact your ability to be a friend and have friends. Let them know it’s ok if they ask you questions about your disease.
  • Be honest when your illness prevents you from keeping plans. Start letting friends know when you’re actually too fatigued to go out for drinks instead of just saying you can’t or that your plans changed. Let your friends know if you want to be part of their plans but fear that the get-together is going to be too difficult on your joints. Talk about how you can update the plans so you can be included. Be up-front about understanding that you won’t always be able to be included and that you’re ok with it.
  • Remind your friends that you really do want to spend time with them. When you hole up in your apartment during a flare-up: to you it feels like survival; to your friends it can feel like being ignored. Tell your friends that you value spending time with them and are sad when you can’t.
  • Tell your friends when you are super sick. It’s so simple it sounds dumb, but we get so used to being sick that we forget to tell others when things are rough. Try to tell your friends when you are extra sick or have a difficult medical treatment, test, or appointment coming up. Actually start letting them know when you have an infection or a super bad flare, so they can know what you are going through and that you might be a little AWOL that week.
  • Let your friends see you sometimes when you are really sick. Sometimes we’re just too sick to be with others, and that’s ok. But a lot of other times we just don’t let people come over because we are too embarrassed by our messy dishes, gross symptoms, and lack of energy. A real friend is going to learn how to come over to your place when you are that sick and be ok with your messy place and annoying, un-exercised dogs. But they can’t do it if you don’t first invite them in.

Most importantly, today I hope you hear that pursuing friendship while chronically ill is worth the effort. Doing the things I outlined above is going to feel scary and vulnerable. It’s going to feel uncomfortable for both you and your friends. It’s something you will get better at over time and that you will have to, like me, re-learn in seasons when sickness kicks your ass all over again in new ways. But, always, always, it will be worth your energy. I cannot promise that every person you pursue will respond to you and your illness well. But I can promise you that someone will respond well eventually, that there are people out there who will let you teach them how to support you and be there for you in more beautiful ways than you can imagine today. I can promise you that the courageous work of choosing friendship over isolation in your sickness will pay for itself in more joy than you can imagine. 

So, today, choose friendship. You’ll be happy you did. 

Want to talk more about this subject? Join me today for a live-chat at 5pm EST at the World Autoimmune Arthritis Day Headquarters online.

Are you the friend of someone who is chronically ill? Join me next week as I interview my friends on what it’s like to be a friend to someone with a chronic illness and what they’ve learned in the process.

Sometimes chronic illness just stinks.

I'm sitting at the doctor's office, the place I'm more familiar with than anyone should be. All week I've been fighting an infection, and I kept telling myself that this was normal. Just a normal part of my life on two forms of chemotherapy.

But on the way here it hit me that this just really stinks. And, no, it's not normal.

When your dog has an accident all over your floor, and you're almost too exhausted and dizzy to clean it up. But you do it anyway. When you can't make it through yoga without leaving because you're joints are just too immobile that day. When you spend all your energy on work and then are unable to sleep from all the coughing. These things are inconveniences, but they are also losses.

There is a slow current of loss in my life. My soul feels stronger than ever--alive, bright, and luminous. But my body--it's a whole different matter. Yesterday after a fantastic consulting meeting with my pastor I asked my husband what he thought I'd be doing now if I had never gotten sick. Now that's a dangerous question...

The truth is that without sickness I honestly would have achieved so much more by now. It's either sad or amusing that I'm a high-capacity woman in a low-capacity body; so I choose to be amused most the time. But you know what's even more true? While sickness has made the quantity of my achievements lower, it has made the quality of my voice stronger. 

The current of loss in my life leads me to places I would have never gone without getting sick. My life has immeasurable impact in the little things and bearing the losses of convenience, opportunity, and physical freedom drive that impact.

Today, when life is hard, frustrating, and literally messy, when everyone else is at work and I'm in bed, I tell myself that the ugliness of today is creating a strength and beauty that won't come from any other stream. Dear friends, who with me are so desperately sick of being sick, take heart--our stinky, infection-ridden days are making us women and men of unconquerable courage. The chronic illness life is a life of holding the tension between acknowledging pain and finding meaning. Some days we can hold that rope better than others. And if you can't hold the tension today, then know that the author of all good things can hold it for you. In him, the disappointing weight of being sick and extremely capable in mind and heart finds a resting place. Today, when being sick just stinks, I can remember that I am loved for who I am at my core, not for what I can do, and living in that love lies my greatest accomplishment and biggest impact. 

Today, when it just stinks, remember, you really are loved.


This piece has been republished over at The Huffington Post.

Developing and managing a second disease requires bravery.

This past Fall I felt sicker than I have ever been in my life. Fatigue covered my days like heavy fog. Nausea haunted me, and I found myself vomiting a couple days a week for no good reason. I forced myself to go to class and see my therapy clients, but otherwise spent the rest of my waking hours in bed.

It was such a confusing season, largely because fatigue is a big part of my autoimmune disease (Ankylosing Spondylitis). I'm used to debilitating fatigue, but this was worse. Oddly, my joints weren't hurting, and usually my fatigue corresponds with intense joint pain. When I start to feel sick, my first thought is that I am in a flare-up of my disease. It's usually that simple. When something new hurts--like my eye--I figure, AS can affect that too. (Don't worry, I see a doctor when odd pains crop up!) When that's not the cause, I start thinking I've caught an infection or a virus, because being on multiple immunosuppressant drug therapies definitely makes me very susceptible to infections. But it wasn't that.

Days of nausea and fatigue turned to weeks. And then weeks turned to months. And after every doctor visit and each new medical test, I had no answers. In those months I began to feel sad. Really sad. A heaviness veiled my normally happy disposition. As a counselor, I knew I was experiencing symptoms of depression. But being sick with no answers is inherently depressing, so I figured that was why.

My rheumatologist faithfully searched out the cause of my mystery illness, determined to see me well. Both her instincts and mine told us this was not AS, and likely not rheumatologic. And when blood tests, CT scans, and biopsies came back normal, she tested one more thing. "It's a far-off chance that it's this, and I've never seen it in my entire career, but let's check it anyway," she said.

The day she called with my test results, I was fully expecting to hear the results were, again, normal. The undiagnosed but very sick know that normal test results are often the worst news to receive. Abnormal or positive test results mean answers, mean help, mean life can get better than the hell you are living. Almost no one understands why getting bad test results is such good news except the determined and courageous patients who have not given up on fighting for answers to the cause of their illnesses. But that day, I got the beginning of an answer.

My doctor informed me that during my cosyntropin stimulation test, my adrenal glands produced virtually no cortisol, which meant that I had Adrenal Insufficiency. In the onslaught of google research that commenced after that I learned that all the things I had been experiencing, including depression, were symptoms. I needed to start steroid therapy to replace the cortisol my body wasn't able to make. Hydocortisone made my life immensely better in the span of about two weeks. But managing my new condition has not entirely stabilized, and we still are determining the cause of my Secondary Adrenal Insufficiency.

Developing an additional condition has meant seeing more doctors, specifically an Endocrinologist, having even more regular blood work, and sucking up the fact that I'm dependent on steroids daily to function. (Really, to live. Without steroids, Adrenal Insufficiency patients can go into life-threatening adrenal crisis.) 

Me on the right, with my extra round steroid-face and a genuine smile. With Bess, who also writes for  Anchor for the Soul .

Me on the right, with my extra round steroid-face and a genuine smile. With Bess, who also writes for Anchor for the Soul.

Developing and managing a second disease requires bravery. About 25 percent of autoimmune patients have a tendency to develop additional autoimmune diseases. (Via Maedica) And that's not counting co-morbid medical conditions outside of autoimmune disease that can occur, like mine. The reality is, many of us have or will develop a second diagnosis. And that diagnosis will bring new challenges and opportunities to process, grieve, and hope for the better life we all want. Six months after learning about my new condition, this is what I have learned:

1. Listen to Your Body. When we are attuned to our bodies, we often can know when something is off physically. Trusting your internal sense that something is off can enable you to be persistent to get the care you need.

2. Value Your Health. The fear of not getting answers and being judged as a complainer or drug-seeker can keep us from pursuing medical care. If you experiencing new, unexplainable and frustrating symptoms, value yourself enough to do the frustrating and scary work of seeing your doctor(s). 

3. Let Yourself Grieve. Giving yourself the space to grieve your illnesses is not a pity-party. Even though you are used to being sick, it's a blow to find out that one more thing is wrong with your body. Let yourself cry about it. Talk to a friend. Go back to see your counselor. (That's what I did.) 

Bravely giving ourselves the space to listen to our bodies, value our health and existence, and grieve the assaults to that existence empowers us to find joy in pain, energy in fatigue, and stability in sickness. Whether you have one diagnosis, or two, or five, I hope you'll be brave and value yourself today.

An open letter to the first doctor who invalidated my pain

I met you when I was 20 years old. Scared, worried, and in the worst pain I had ever experienced, I held the tiny seed of hope that doctors would be able to help my pain become past tense. You were just a first year resident on your rheumatology rotation at the University of Michigan hospital, responsible for doing my initial examination before the real rheumatologist came in. I don't know anything about your life, your own experiences with physical pain, or the training you received before you treated me. All I have to judge you by is that visit and how you treated me. 

When you came into the exam room you quickly told me that all of my bloodwork had come back normal with no signs of inflammation. My experience since meeting you has taught me that when medical tests do not readily reveal the source of pain, doctors can be apt to judge one's pain as psychosomatic. But I didn't know that then. I just thought doctors were supposed to help.

You didn't listen when I shared how much pain I was in and what exactly hurt. You just pressed on various points on my body asking if they were tender and shared that you felt I probably had Fibromyalgia. You didn't hear that I was not in muscle pain and that none of the "tender points" felt tender. I can't say what you saw when you looked at me, but it certainly felt like you didn't see me. I don't think you saw the otherwise extremely healthy 20 year old college junior who up until a few weeks beforehand had spent most of her free time rock climbing, running, and playing soccer. I can't say I know what you were thinking about me, but your curtness made me feel like nothing more than an inconvenience. 

But I'm a fighter with a researcher's heart and mind. I had already read countless articles in the weeks I had been sick, searching for answers to my joint pain. I knew Fibromyalgia wasn't it. And I knew you weren't really listening to me. 

But now, 7 years later I want to thank you. Yes, thank you. Your invalidation of my pain helped me begin validating myself. To get help I had to trust my intuition. I had to trust my inner knowledge that something was profoundly wrong in my body, even when you didn't fully believe me. Your trivialization of my pain set me on a trajectory of learning how to honor my body and all of the emotions that surround being sick. Your invalidation taught me that minimizing my pain is not ok. And for that, I am forever grateful. 

Sincerely,

Katie Jo Ramsey

P.S. You were wrong. I have Ankylosing Spondylitis, a disease which often shows up as normal on blood tests. Arthritis Research UK estimates that only 30–40% of people with ankylosing spondylitis have inflammation that can be picked up in a blood test, making it all the more important for patients like me to trust their symptoms and fight to be heard.

Getting my Remicade infusion last year (Due for another tomorrow, thank God! Flaring while I wait for it...)

Getting my Remicade infusion last year (Due for another tomorrow, thank God! Flaring while I wait for it...)

This blog was also published at The Mighty, a community of storytellers facing disease, disability, and mental illness together. See it here!