I had this piece written and edited and crafted, perfectly timed for both IBD Awareness Week and the six-month anniversary of a diagnosis few know about. I wasn’t at peace, though, and typical of my writing process, there was more refining of my heart to be done before it could be shared.
So what was constructed and perfectly worded for public display has become this piece. A piece containing too much to be summed up into a title. A piece I write sipping ginger tea with probiotics, heating pad glued to my abdomen, bottom diapered and feeling the tingly God-sent magic squoze from a tube labeled Calmospetine.
Raw. Authentic. A broken heart laid bare. Unfinished. Unknown. In the middle of an unrelenting fire of hardship, suffering, and pain. No conclusion. A work in progress.
We all have anniversaries; dates marking important celebrations or life change. In fact, our calendar has been built on various holidays marking anniversaries of various saints, stars, and country-changing historical events. Add in each of our individual stories to commemorate…birthdays, dating dates, marriage, "gotcha days," deaths, and devastating losses…these anniversaries are woven into the fabric of our lives.
In the world of chronic illness, diagnosis dates become anniversaries. They represent profound shifts in perspective, heralding drastic and life-altering change. They arrive every year amidst complex feelings of gratitude, victory, deep sadness, and the crushing reality that this is never over. Surgery dates, too, become an annual observance. I had three such anniversaries – two in May, one in July.
Six months ago, I was given a new diagnosis. Another anniversary to keep; another date to both dread and celebrate. Two in May, one in June, one in July.
I have Crohn’s Disease.
Those four words have turned over and over in my heart for the past six months. I have sat in them; wrestled with them; despised those four words with every ounce of my being. I couldn’t think that statement without triggering a tearful meltdown for a month. It took two months to tell someone outside my immediate family. I still struggle to have a full conversation about it.
Friends, I am more raw than I care to admit.
The thought of endless bathrooms, diapers, wipes, infusion therapies, insurance battles, heating pads, painful days and sleepless nights, food struggles, and unknowns has overwhelmed me. I have denied the realities that Crohn’s brings and agonized over the changes to work and school and future plans this diagnosis heralds.
I have refused to accept the actuality of what Crohn’s brings. More pain, more blood, more accidents. Running to the bathroom, long nights, exhaustion, naps. Requiring more time, more energy, more rest to do my hair, shower, and shave my legs. Needing to think in terms of Spoon Theory. Experiencing new symptoms – muscle aches and fatigue, body weakness – and not knowing how, even after 10 years of Ulcerative Colitis, to manage them or cope.
I do not want to do the reality I find myself living.
That, friends, is the hallmark of chronic disease. This is the mark of a new diagnosis.
Inflammatory Bowel Disease is not easy to explain. Even a simple story is intricate and multi-faceted. Mine is littered with both UC and Crohn’s, three surgeries, a J-pouch, pelvic floor dysfunction, a list of drugs that do not work or cause allergic reactions, and a difficulty attaining remission. My IBD journey is long, winding, distinctive, and far from over.
It is hard to give a glimpse…even the clearest of windows is never transparent enough. Broken stories, hurting bodies, are not something easily understood by the masses. They are not comfortable. Such stories reach deep and involve all dimensions of being. They touch those privileged to interact with the story-bearer. They are not restful.
Chronic disease is easy to hide; so effortlessly missed by others. Unintentionally. It is why they are often referred to as “invisible illnesses.” Most of the symptoms – physical, mental, emotional – cannot be seen in a glance. It is several physical levels, a collection of mental spaces, a gambit of emotion, and a very personal spiritual realm…and all of that can be readily hidden under a well-practiced mask of “I’m fine; I’m good; Really.”
When I started this blog, I made a promise to do daily with those of y’all who choose to engage. I made a commitment to share the trials I stumble through and the flames that expose, shatter, and refine. Full confession – my daily is hard and unscheduled and very much unpleasant.
I have Crohn’s Disease, and for the last six months, I have gotten worse and not better.
I have Crohn’s Disease, and for the last six months, I have fought for healthy mental and emotional space and felt like I was losing most days.
I have Crohn’s Disease, and despite being told my IBD journey was over after my final surgery in 2017, I am right back in the thick of it.
Do you recall that refining process I mentioned when we started? In just a few short weeks, that extensive transformation has reminded me there is hope; a starting place. As strange as it sounds, I have been prodded to remember that in my weakness, in my hurting and fatigue and struggle, in my unknown…in what seems to be the most desolate place…there I find the most comfort and joy and peace.
I thought I would transition easily; I have done this more times than I can count, and I’ve lived with a similar disease for over a decade. I thought I could reintegrate IBD into my life like it hadn’t left. I expected myself to know what to do and how to adjust. I am here to tell you I was terribly wrong.
Crohn’s Disease is a radically different diagnosis; one that has fundamentally shifted my approach to living; to thriving. I am learning to redefine productivity and laziness; learning to give myself grace, recognize where my body is at and what it needs. I am seeing the importance of being gentle with a body that is not normal, not well, and not easily healed. I have an incredibly long trek towards health ahead of me.
In a world where most are looking forward to a better year, making resolutions, and planning for radical life change…your girl over here is waiting for genetic tests to come back, trying to figure out what she can eat without getting sick, and desperately praying for her medication to work.
I’m figuring out how to communicate boundaries to people who know and love me and those who are still figuring that out – what to ask and what not to, why I am not fully participating or not texting back “promptly,” why the house is still varying degrees of a mess. And I am learning to not feel guilty about those things and more…not to internalize any blame or guilt placed unfairly or ignorantly on me.
I have been thrust back into a life I gladly left in my past; a fiery furnace I considered conquered. In case I haven’t made it explicitly clear…this is excruciatingly painfully hard. In many ways, I have been ripped apart, stretched beyond comprehension, and destroyed from the inside out.
I believe one day, near or far, I will emerge from the fire, refined. More precious, more pure, more reflective of the grace, glory, and greatness that brought me through. In the meantime, I believe I do not walk through the flames alone, and I cling to the truth of purpose in the blaze. It is like I said before…a work in progress.
We are all works in progress, and that is okay.
This last year looked very different for each of us and so will this new one. We each need refining in a specially crafted and matchless way. Our fires look different, and they are timed uniquely, too. Perhaps you are feeling a bit lost. Maybe, like me, you are trying to find footing in a new world, or perhaps your entire foundation has been shaken. Your outward existence might be perfect and put-together and idealized with a very different inward state. Whatever your hopes and dreams and plans, your fears and regrets and disappointments, your sadness and grief and sorrow…hidden fires cannot remain hidden forever.
We each have a timeline of sharing and processing; we reveal the fires we experience differently; we each allow others into our fires in our own time. Sharing my diagnosis has had a lengthy timeline – longer than I would have imagined! It has been so much harder than I ever expected.
My heart aches for the pain of your circumstances, and my soul mourns for the cries yours pours out. As I am learning to be brave, to stand firm, I also long that for you. Crohn’s Disease is causing me to flounder, and as I am coming to terms with that, I yearn for you to also accept that this is an okay place to be for a time.
In the past six months, Crohn’s has revealed much, and my venture through this particular furnace is far from over. This disease will reshape many aspects of this year, and I cannot fathom how it will change how I will live; what life will look like this time next year.
Re-evaluating what we thought we knew is never easy. It takes a great deal of self-awareness and openness. Anniversaries, new and old, are perfect catalysts for this introspection and reflection. What does your life truly need? Who does your life lack? What does your body need? Your heart? Soul? Is there an area you need to concentrate on - a place that needs to be nourished, healed, demolished, rebuilt? How do you need to redeem your time? What impossible prayer is your fear or lack of faith preventing from crossing your lips? To make this new year different, what can you change? What is in your control? What needs to be let go?
I would encourage you - challenge you - in this new season, new year, to contemplate revising your life. Rethink your thoughts. Rearrange your life if needed.
Friend, it is okay to not know. It is okay to falter in your walk, to waver and to struggle. Don’t stay there forever, okay? Keep fighting. Keep pressing towards the hope extended to you. Battle for truth in your heart and in your life, and wrestle for clarity. Resist the fear. Refuse to be conquered by the fire.
You are not alone…I am doing the same thing. Every single day. On hard days, those fights occur by the minute and by the hour. Giving up looks really good. Don’t give up. Find someone who will remind you to keep fighting – to keep going. I need those reminders. I would not have made it through the last six months without them and the people giving them. If you don’t have a someone, I’m your someone. I’m here – let me know.
Despite the world-shaking changes Crohn’s has delivered and promises, it is not over. Life is not over. It looks different…oh how differently it looks! But it is not over. And your life, friend, is not either.
For a girl who has no idea how to manage her new disease, who struggles to share the shattering effects it is having, has no earthly idea how to cope or move forward, and absolutely no clarity about her future…that is all the encouragement I can offer you today.
Life is not over. Keep believing. Keep fighting. Don’t give up, and I’m here doing it right alongside you.