Reflections on illness, two years in

Dear Team Joy,

It’s officially been two years (to the day) since I was diagnosed with #Crohn’s.

When I first was diagnosed, I struggled to write about it, even in my own journal. The magnitude of what I was facing was too big and unknown. But as the shock wore off, I have found writing about my own health journey to be healing. Partly because it nourishes my own desire to be seen and understood, but also because I know it creates more space for the sick in a world that demands health.

So many of us with #chronicillnesses suffer in silence because we believe we have to, because we have covered our body’s “failures” in shame. The more I claim the fullness and complexity of my reality, the more I believe I am worthy of taking up space in the world.

This blog comes to you from my infusion chair. I am sitting in a plushy lounge chair, the kind probably designed for movie theaters, with a lever on the side that takes you back to a 45 degree angle. I am noticing how rare it is to be literally strapped in for multiple hours. Even on a plane, when you are asked to be sedentary for a set period of time, you are not literally connected to the plane through your veins. There’s a regular surrender required in these infusions, handing over my mobility and trust to receive support. I am hooked up to a blood pressure machine and an intravenous drip that will deliver me a drug called Remicade over the next two hours.

This is the fourth biologic drug I have tried in the last two years: Stelara, Skyrizi, Entyvio, and now Remicade. During my first ever infusion with Stelara, I had an intense allergic reaction. And though I’ve tried new drugs since, my body and mind can’t help but panic with each time I am introduced to a new drug.

Is it happening again? Am I having a reaction? Or is my heart merely racing at the potential of a reaction?

I also used to tie my immense hopes and fears to each drug.

Will it work? Will I get better? Will I get worse?

Two years in, even as the drugs change, I am more comfortable with each infusion. Partly because I am healthier (although still working towards remission), partly because I have more thoroughly surrendered to the factors outside of my control (like the drug’s effectiveness), and partly because I have adjusted to the logistics of it all.

The logistics of a chronic illness force me to pay meaningful attention to the details of life, which I naturally find boring. When I first got diagnosed I thought how the fuck am I going to manage all of this? Appointments, insurance, prescriptions, follow-ups, transferring records. It’s not developing a big exciting strategic vision. The details matter immensely.

I need to make sure my health insurance company is aware of and covering my various appointments and medications, that claims are made correctly, and that I am on top of all the associated bills for labs, pathology, treatment and doctor time. I need to know all of my medications, communicate clearly with the rotating staff of nurse practitioners in the infusion center about my symptoms, and voice what I think needs to be escalated to the doctor’s awareness; balancing a mix of listening to recommendations and asserting a perspective.

In consulting terms, I am fucking owning my work-stream and managing up.

While these infusions are becoming logistically more manageable, they also trigger deep emotions every time. Going to this center each month, driven by my mom who lovingly refuses me to let me go alone, requires me to claim my identity as a patient— a person with an illness. A person who is sick. A person who needs care beyond what I can provide.

Imagine most of your life your body works mostly how you would expect. You might begrudgingly be frustrated about this or that, but the owner’s manual is generally accurate. Then all of a sudden, or what appears to be all of a sudden, it breaks down.

And not just a little, a lot. An autoimmune disease is not like spraining your ankle, which is annoying but not scary. Autoimmune diseases are systems-wide failure. Shortness of breath, headaches, stomach bloating, vaginal pain, pain every time you go to the bathroom, trouble concentrating, a constant sore throat, weird joint aches, and surges of anxiety as the manager in your brain tries to figure out what the fuck is going on.

You feel like you are slipping away as your internal reality becomes less accessible to the people around you. Pain brings your focus internal, and clouds how you see everything around you. You can’t reach into others’ worlds the same way anymore because you are so consumed by your own.

Despite your best attempts to describe it, your loved ones can’t feel or understand it. Some don’t even know how to react to it — watching you reckon with your own mortality is too triggering for them. When they can’t hold space for their own pain, they certainly can’t hold space for yours.

In the beginning, I internalized other people’s reaction to me. I was so used to seeking approval from others (in ways I wasn’t even conscious of). But having a chronic illness doesn’t elicit approval, it elicits pity and all other kinds of wack-a-do responses. Like the well-intentioned throwaway comment, “Oh I am sure you will beat this.”

Are you sure? How can you be sure? You don’t know me, you don’t know my doctors, you haven’t seen my medical chart? You don’t know that Crohn’s isn’t “beatable”! Why would you say that?

My internal anger would skyrocket, while on the outside I would politely nod and half-smile.

They say that for their own comfort. To soothe the part of themselves that is deeply afraid of things not being “ok.” I have learned to place less stock in these responses over time, getting less triggered by their words and holding more compassion for their fears.

People’s responses to my illness have very little to do with me. I put less energy into presenting a palatable version of myself to others and instead, put much more into making myself happy and well.

I often wonder if I would be so committed to the journey of joy, if I hadn’t experienced so much pain.

I have always been drawn to the path of self-awareness, realizing that when I follow my intuition, I often experience less internal tension. But until I got sick, I was still negotiating with myself, playing it small, trying to have my cake and eat it too. I worked hard to belong at the highest levels of strategic efficiency and maintain my status amongst the prestigious elite (both in terms of making $ and being perceived as impressive), and yet I still tried to sporadically listen to myself, smattering in a few more feelings, plants, and breaks than the next girl. ??

But I got kicked out of the world of the healthy. I could not keep up, and I could not deny the needs of my body any longer, even if I wanted to. I was forced to chart a new path forward.

For a while I thought, “why me?” Other people can work stressful jobs, deal with an onslaught of anxiety, and eat what they want without developing a chronic illness. (The truth is this catches up with most of us, but I didn’t see that at the time).

Why am I weak? Why am I the one that broke-down, especially at such a young age?

I still don’t know the answer, and unless more is understood about Crohn’s I will likely never know.

I wouldn’t wish this kind of illness on anyone.

But when I am quiet, when I have the courage to sit with the immensity of what I have been through, I feel an overwhelming amount of gratitude for my body.

Amidst intense chaos, opportunity for personal gain, and a deep quest for external validation, I set off alarm bells to bring my attention back to me. To slow down and finally pay attention to myself in the way I deserve. To learn to be gentle, compassionate, slow, and curious. To hold myself close, to realize I am worthy of my own love, worthy of following my own dreams, worthy of creating a life that feels good to me.

And although I was once terrified of charting this new path alone, I am not now. Even when they don’t understand it, or don’t do it the same way themselves, my parents, friends, and this community of readers have rallied around me to encourage me and support me in finding a new way to be, live, and lead. And I am so grateful.

To be a great coach I need to pour into me. I work with my own coach, learn alongside other coaches, and get to obsessively read self-help and personal development books as PART OF MY JOB. ??

All of this work has brought clients into my life who are on similar journeys back to themselves. Because of my deep inner work, and all of the support I have sought around me, I actually have the tools to help them. I have been amazed by the spirit of generosity that this work brings out in each of us. My clients will share resources back with me that remind them of our coaching sessions, or that they think other clients might benefit from.

Each time this happens, I am sparked with delight to be building a business that places wellness, love, joy, and learning at its core. My clients learn from me and I learn from my clients. This becomes a reinforcing cycle that helps me expand into spaces I am excited to inhabit.

I know I am here to heal. Heal my body, and help heal others. I wish I didn’t need a chronic illness to arrive at that profound truth, but I am here now playing the cards I have, to the best of my ability.

Much love,

Isabel