ulcerative colitis

It's ok...

that it's not ok.

When you talk to a friend who isn't doing well, do you instantly feel like assuring them it will be ok?

This has been a big week for me on several fronts but one area in particular is weighing heavy on my heart--my physical health. Yesterday I had my long-awaited appointment with my new gastroenterologist (GI doc), Dr. Kirkpatrick. It was one of those rare appointments in which I felt truly respected, heard, and honored as a young person who has faced significantly difficult circumstances. But it was also overwhelming. Heavy. Discouraging and encouraging all at the same time.

Sometimes when I share with friends or family about heavy days like these, I sense them wanting me to just feel better in how they respond. And I know it's out of love. It hurts to see those whom we love in emotional and physical pain. It seems socially unacceptable to "not be ok." Regardless of social protocol, experience tells me that my heart will be healthier if I allow myself to not feel "ok" on days like these instead of pushing through, forcing a smile, and cajoling myself to be better by forcing cliched truths down my throat.

Truly difficult circumstances need to be respected for what they are. Part of what overwhelmed me in my GI appointment was how seriously Dr. Kirkpatrick took my symptoms. After talking through our plan of action he looked me in the face and said, "Katie Jo, I am so sorry that you are 26 years old and have had to see as many doctors as you have and that you have been this sick." [Stunned.] I don't think I've ever had a doctor express this kind of sensitivity to the fact that being this sick at 26 is not normal. In fact, I've mostly forgotten that my experience isn't normal! I'm so good at pushing, at being resilient, that in the race to make it through sickness and still have a life I end up mentally minimizing the gravity of my fight. Sometimes I need to let myself feel that it is wrong and hard that I have to be sick. I need to let myself grieve over the strong possibility that I have Ulcerative Colitis in addition to my spondylitis. The human heart wasn't made to bear significant sickness and just be fine with it. I was made for wholeness, for endless possibility, for love and life and joy and peace. Sickness cuts against the longing in our hearts for wholeness.

Today a client told me she feels her "body is failing her," and my eyes instantly welled with tears. The most enduring feeling yesterday left me with was a sense of a loss of control of my body. This was my pain yesterday, the reality that I needed to let sink in. Existentially, none of us are in full control over our bodies or circumstances. But those of us who suffer from significant medical illnesses have to intimately face this fact.

So, right now my body feels out of control. Medicines I have to take in order to function are causing me to gain weight, no matter how much I exercise or eat well. And even after years of taking chemotherapy infusions for AS and other strong medicines, I've still developed some sort of additional autoimmune problem. This is all immensely frustrating, beyond my ability to form in words.

Today on the way to my internship I meditated on Psalm 91:1-2.

He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
I will say to the Lord,
“My refuge and my fortress,
my God, in whom I trust.”
— Psalm 91:1-2

After giving my heart space to break yesterday I was able to sit with God in this Psalm. The words sank in deep. I dwell in the shelter of the Most High. I abide in the shadow of the Almighty. God is my refuge and fortress. 

Years ago when I first got sick and was waiting desperately for a diagnosis and help I remember reading through the Psalms and realizing that when they speak about "waiting on the Lord" they are talking not about waiting for our circumstances to change but about the goal and end of our lives. As I did then, I again am realizing that I am not just waiting to be healed, for diagnoses, and for medicines to work like doctors hope they will. I am waiting for God Himself

This morning as I repeated Psalm 91:1-2 to myself over and over I realized again that what matters in life is not how much I weigh, how I look, or even my ability to counsel, or be productive. The object of my life is to know God. 

My suffering is holy ground. God is in the midst of it. It's a mysterious thing to attempt to describe, this God-filled, painful walk. There is something about recognizing and feeling my utter lack of control that gives me perspective to see beyond my circumstances. Grace is knowing that a diagnosis and more suffering is not the end of my story. God is the end of my story. Communion with the living God who is conquering over disease and death is where my life is headed. And the mysterious beauty is that the point at which I reach the end of myself and my illusion of control is also the place in which I can know the presence of the God who suffered yet lives. These are moments of trust, of actively placing myself in the care and fortress of God. And they only come when I am willing to thoroughly acknowledge that I feel small and scared, angry and confused, weary from years spent carrying uncertainty. 

We have to allow ourselves and others to "not be ok" in order for them to know and experience real hope. I need space to break, and I'm convinced others do too. Those uncomfortable moments of not knowing what to say when you so desperately want to fix and soothe (or be fixed and be soothed yourself!) are the very spots where pain is carving space to know and experience hope. Don't rush through the pain. Hope's on the other end if we only can let ourselves feel.

My "freedom nails" with my #CureArthritis bracelet. For about a decade I've often painted my nails red when I feel the need to rise above my circumstances, to feel free. Silly, but effective ;)

My "freedom nails" with my #CureArthritis bracelet. For about a decade I've often painted my nails red when I feel the need to rise above my circumstances, to feel free. Silly, but effective ;)

That's where I'm at--facing a new diagnosis, feeling somewhat uncomfortable in my own skin, and trying to be at peace with the fact that none of this will be fixed quickly. I realize that some of you are facing similar diseases and might be in the diagnosis process yourself. When I first got sick I had no one to look to swap stories or make my symptoms make sense. So, for those looking for details of how autoimmune disease can look and feel I would like to be more honest and detailed sometimes with what I'm facing health-wise. Perhaps later in the week I can explain in more detail, but for now know that my doctors are very suspicious that I have Ulcerative Colitis (UC) either in addition to Ankylosing Spondylitis (AS) or that UC is actually what I've had all along and that my spondylitis (inflammation/arthritis of the spine) has actually been caused by UC the whole time. I will be having an endoscopy and sigmoidoscopy July 20th and hopefully will get some definitive answers then.