You Are Not Your IBD Body

Today’s episode is what I would call a mindset episode.

We talk a lot on The Cheeky Podcast about using food, and supplements, and alternative remedies, but one thing we don’t get into enough is how our mind can make the biggest impact. It’s something I’ve been learning more about lately.

It was always there, but it wasn’t until I started having some health challenges again that I realized just how much the mind plays a significant role, even in areas that are unconscious but ingrained in us.

Three Things You’ll Learn in This Episode

🌿 What’s really going on inside your head when someone asks, “How are you?”

🌿 Three questions we must ask to begin to separate who we are from what our illness is.

🌿  A conscious-thought exercise to set your day (your week or your month) off on the right foot.

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Episode Transcript:

You are Not Your IBD Body

On this podcast, I’m most often talking about lessons I’ve already learned, I’m on the other side of something and I can step by step the information for you with ideas and concepts related to IBD that I’m comfortable teaching. Today, I don’t have a tutorial or a “how-to”. It’s more of a show and tell. I’m in the middle of this one with you and hopefully today, we can grow and learn together.


Hey there dear one, we meet again! Karyn with you on an especially introspective episode of The Cheeky Podcast. We’ve had a crazy Covid week at our house and I’m hoping all is winding down. This is our first time with the virus. 3 out of the 5 of us had it. I’m not part of the 3 and I’m hoping upon hope it stays that way. Covid is an unrelenting beast, it affects everyone differently (I’m not telling you anything you don’t already know) but I hope your experience with it, if you have an experience with it that it is mild and it’s quick. When will we get to fully move beyond Covid?  What a long, strange trip it’s been.

Today’s episode is what I would call a mindset episode. We talk a lot on The Cheeky Podcast about using food, and supplements, and alternative remedies, but one thing we don’t get into enough is how our mind can make the biggest impact. It’s something I’ve been learning more about lately. It was always there—I’m a psychology major—and in fact my training in graduate school was in a field called medical family therapy (so the medical side of the mind) so how the mind works and how we can use our mind to our healing benefit is always there, but it wasn’t until I started having some health challenges again that I realized just how much the mind plays a significant role, even in areas that are unconscious but engrained in us.

Let’s start our with IBD mindset conversation with a scenario. One that probably happens to you on a daily basis. It’s when someone casually asks you, “How are you?” Maybe it’s a friend, a co-worker, your boss, maybe it’s the nurse at the doctor’s office when you’re getting checked in, maybe it’s the check-out worker at the grocery store. Besides the perfunctory response we always give which is, “I’m good how are you?” silently, after hearing this question, we may look inside for a split second—it’s so unconscious, so brief that we barely know it’s happening—and we think how am I really doing? The answer to that question is so automatic and most of the time it has nothing to do with how we are really feeling.

It’s in moments like these that we’ll instantly mentally flip back on our day, on the last couple days or the last week and think, how many times have I been stuck in the bathroom, how much fatigue do I have, is my belly aching, am I bloated, gassy—you fill in the IBD symptoms that plague you. That’s how we judge our honest response if we were to actually give it out loud when someone asks, “How are you doing?”

Like I said, it happens so instantaneous and it’s so unconscious that it all happens before we even realize we are doing it.

What’s my IBD doing? Because that’s how know how I’m doing.  

That’s the way I was playing it too until very recently when I started consciously thinking about my immediate reaction to this question, “How am I doing?”

Why was I equating my mood solely on what my Crohn’s was doing?

Why was I giving this illness so much power?

Why was I letting IBD dictate how I was showing up in the world, especially when I felt bad?

What if I could separate who I am, my mood, my state of mind, outlook on life from the state of my IBD… could I separate all of this from IBD, even when my IBD is showing up in nasty ways.

Could I get asked that same question, “How are you?” and answer after that quick mental flip, answer with an honest “I’m great” even if my IBD had betrayed me that day?

Have you heard of the term toxic positivity? It’s all abuzz lately. Psychologically minded experts talking about how just having a positive attitude, an exceptionally optimistic attitude, can actually be detrimental to your well-being.

“My life my be on the skids, but I’m on top of the world. Nothing’s going to get me down. Today is another day and I’m just grrreeaaatt!!

The world just the most beautiful place and aren’t I lucky to be alive?”

We all know annoying people like this. They’re so freakin’ happy. Their world is rainbows and unicorns… and the honest truth is that after fives minutes with these people, we really just want to smack them for their toxic positivity.

When I’m talking about separating your IBD from your outlook on life, that’s not what I’m talking about here. I’m not talking about a false or inflated sense of peace or happiness or positivity.

Sure, you’re life may suck but smile and the world will smile with you.

No, that’s not what I’m pondering for myself or proposing for you either.

What I’m talking about is developing a real sense of self that includes highs and lows, but those highs and lows aren’t constantly dependent on the state of our IBD.

Does that make sense to you? I hope it does. It’s not about pretending we don’t have IBD, it’s about having a real life (the good and the bad) anyway. A life that’s not centered around IBD at every turn.

Because what I’m realizing lately is that this pattern of equating, “How am I doing?” is way too enmeshed with my IBD symptoms or non-symptom that day. And it’s giving IBD way too much power over me. And I’ll tell you something, the last thing I’m going to give that son of a B disease, is power.

Now let’s get one thing straight. The state of our Crohn’s or colitis matters. The fact that we have this illness at all, matters. Our body has betrayed us. The body we’ve come to depend on and rely on has betrayed us. Let’s just sit with that for a moment because it’s huge. Think about the betrayal and vulnerability one feels when someone breaks into their home and steals their personal belongings. Has that ever happened to you? It’s a betrayal of your personal world that was supposed to be safe. That’s kind of like what’s happened in our body with Crohn’s and colitis. It’s a betrayal of the highest order. Our body is supposed to be there for us. To keep us healthy and safe and in one fell swoop, with this diagnosis, we were betrayed by the entity closest to us in the world—our own body.

But that’s our body. The physical vessel that carries who we really are around. It’s literally the physical part of us that’s carrying who we are from one place to the next. What about our soul, our essence, if you don’t want to get spiritual or metaphysical about it, our personality. You can just call it that—your personality. The unseen but ever present things that make you, you.

Now, I know I’m getting into an other-worldly realm here. Some might even call this religious and for some, that’s stepping on too many toes. But for me, this isn’t a religious principle. You are a being—a physical being—with the housing you carry around you all the time. IBD has infected that part of you, your body. But the inner you, the invisible beautiful soul within—your personality, your compassion, your motherhood, your beliefs, your ability to experience happiness, gratitude, sadness and empathy… I’m suggesting you see this as completely separate from your IBD. Because when you do, when you separate you from your IBD, you may begin to remove yourself from the judging, and the basing “how are you,”  on your illness alone.

We never set out to do it. We never consciously think, I’m going to let my Crohn’s or colitis be my identity. But slowly, over time it happens and it’s time to break the cycle. I’m trying to break the cycle and I hope you’ll join me.

Like I said at the top of the show, this is a new outlook for me. This comes after having some hard times with Crohn’s lately and noticing that it was impacting every part of my life. I was letting it drag me down, not just physically, but emotionally and spiritually. And this thought that maybe I could separate who I truly am, what mood I’m feeling, how I show up in the world, didn’t come to me in an a-ha moment or in a sudden epiphany, but slowly, over time, over the last few months, I started to see that this illness was dragging me down and I wasn’t just letting it to this passively. I was the one attaching myself to the anchor at the bottom of the sea.

So the bottom line here for me and for you is 3-fold. It’s three powerful ways of showing up in the world, despite a diagnosis that betrayed your body. And those three statements go like this:

I am not my illness.

I am not my body.

My identity is more than my IBD.

It’s as simple as that, and it’s as hard as that.

I am not my illness.

I am not my body.

My identity is more than my IBD.

When you fully embrace these three statements, I mean at your core at your heart embrace the hell out of this way of thinking (not just I support the party line), but in your soul embrace that you are not your Crohn’s. You are not your colitis; you realize that it doesn’t need to dictate how you show up in the world. It doesn’t need to dictate your mood. You are not your body. You are not your body. Who you are is invisible, it’s beautiful, it’s un-adultered, it’s pure, and it is fabulous!

So now the question becomes, how do I go about separating myself from my IBD? How do I rip apart this crazy glue of an unhealthy relationship I’m tethered to? Like I said, this is a work in progress for me. In the past, I have found it easy to create distance from Crohn’s when I’m in remission. But when symptoms are raging, when ½ your day is taken up by IBD related crap, when the physical body is betraying you, how do you separate yourself from this dysfunctional relationship?

There is some research in this illness/attachment state. This showing up in the world as if you are your illness. The inability to separate the essence of you from your disease. Scientists call it psychological ownership. And sure, some psychological ownership can be a motivator to help you get well, but when this ownership drags who you are on the inside down with it, now it’s time to look in the mirror and start to make some changes.

How do we go about putting some distance between IBD and who we are at our core for the betterment of our experience on this planet, with this one life you’ve been gifted? We can start by asking ourselves a few questions.

#1: Who was I before my IBD diagnosis?

What was important to me? What lit me up and what brought me down? Who was I and how has that now changed?

Prior to my IBD diagnosis, I would have told you that I was going to be a dancer. I didn’t know if I was going to Broadway or own my own dance studio or teach dance at college, but I was going to be a dancer. It was my life before IBD. But to be really honest with you,  I was also self-absorbed and self-centered. Sure I was 14 when IBD came into my life, but I was on a path to lead what I thought of as a carefree, uncomplicated, but honestly not as fulfilled, not as appreciated life as it’s actually turned out to be.

Who were you before your diagnosis?

Have your friendships changed? Has your relationship with your partner changed? What parts of who you were before IBD would you bring forward into your post diagnosis world if you could? Even if it’s in the smallest of ways. Actually, it’s all about finding those small, significant ways.

So, I’m not a professional dancer, and I probably never would have danced on Broadway, IBD or not, but dancing is still a HUGE part of my life, 30 plus years later. Dancing is when I am freest. Dancing is when I connect with my soul. Dancing is when identifying with IBD truly leaves and magic is all I feel on the inside.

And the cool thing about life, post diagnosis, is that we can embrace some of the freedom that having IBD gives us. Some of the societal norms most people follow, we have an excuse to say, “no.” Many, many woman in our society take years to learn the word no. No, I don’t want to do that. Maybe they get comfortable enough in their skin by the time they are in their 40’s, 50’s… but we get to embrace “no” earlier. Protecting your energy, protecting your precious time becomes a hot commodity when you have Crohn’s and colitis. It means saying “no” when others might feel obligated to say yes.

And it also means that because we are faced with so many challenges, we learn to appreciate the smaller miracles in life. The little joys others may never notice or take for granted.

Who were you before your diagnosis? What did you forget to bring forward into your new life? What do you want to leave behind (like the yes-pleasing gene so many women have) and what seeds can grow out of this challenge like an appreciation for small wonders and little things like a the way a warm blanket comforts you or finding an extra roll of toilet paper in your bathroom when you thought you ran out.

I’m working on answering these questions in my life right now and I hope this question calls you to do the same.

#2: Do I make myself my illness?

Is the best describer of you—“You know, Karyn, the one with that gut disease. Karyn, the one with Crohn’s disease.”

My illness. My disability.

Is IBD your only identity? It is if you choose it to be.

How can you flip the script on your health challenge. Sure, it is yours. You are suffering for it, but it also doesn’t need to 100% define you. It doesn’t need to be 100% your identity. How can you separate you from you IBD?

I hope that when someone meets me for the first time they remember me for other things besides the one with that gut disease. There’s more to me and it’s important that I’m putting all my gifts out into the world.

Finally #3: Am I letting IBD dictate my mood? My every feeling, how I show up in the world?

It’s so tough for IBD to not dictate your mood and your thoughts about how you’re doing and what value you can bring to any situation. It can be completely unconscious. When IBD takes over our day, it takes over our soul, our essence, our personality. This becomes our default mode.

To break this cycle, it takes thoughtful, energy planning. It takes finding peace and happiness in small places to get beyond your Crohn’s or colitis dragging you down with it. So, maybe you don’t feel up to going on date night with your partner. Absolutely understandable. But we don’t need to give up the concept of date night all together. How about sitting in bed with your partner watching Netflix—even pausing the show when you need to use the bathroom or sitting with your heating pad if your belly feels like you inhaled a soccer ball.

Possibly you miss your kiddos big game because you were just didn’t feel up to leaving the house. I missed my son’s soccer tournament a week’s ago, but I sat with him while he shared with me the play by play from the video on my hubby’s phone. Thank God for technology. My kid was so excited to relive those moments that he made me feel like I was there. Now, I can still press play and enjoy those moments over and over again.

When IBD dictates your mood, your life, how you show up in the world it’s a good sign that your self-care has taken a hit as well. In what small ways can you pamper yourself? Yes, you are pampering your body with a bath, with a walk in nature, with 5 minutes of quiet time. But really, the bigger benefit is going to your soul. The smell of a candle, the sights and sounds of nature, the inner peace that quiet brings. These things don’t just invigorate the body, they invigorate the soul. And a happy and well-tended to soul is able to separate their physical state from how they are truly feeling deep in their soul.

This separation of mind and body, separation of your illness with who you truly are at your core takes conscious thought. It takes practice, it takes patience with yourself, it takes grace to falter, and it takes B+ mom effort.

I’m working on all of this. Especially on days when I don’t feel well. So, I’ve created mantra guides, words that stay with me as I work through and try to get better at this much needed separation. My favorite mantra right now is: I am not my body. I am not my body… That’s why it’s the title of this episode.

Conscious thought-practice is also really helpful as well. Conscious thought-practice involves being receptive to what the universe is telling me, taking it in consciously and reflecting the light back out into the world. Conscious thought-practice can involve getting myself in a meditative state and taking in the positive words of affirmation that feed my soul so I know what I am truly feeling. Not letting my body dictate the terms of my emotional state.

So, I thought it would be helpful to leave you today by setting both of our minds on the right path as we move forward with our day and with our life. I thought we’d go through one of these conscious thought exercises so you can really feel how powerful they can be. This is one I created for you and you can feel free to come back to it time and time again, whenever you need a pick me up or a gentle reminder that you are so much more than your IBD.

If you are just hanging out and listening today or if you are doing chores, take a quick break with me and close your eyes. It’s time to take a deep breath and go inward. If you are driving or walking, still take a deep breath with me. You can let these words passively wash over you. Either way is good.

You are not your illness.

You is inside, you is the real, inner, unseen you.

It’s your soul, your essence, your personality, you’re her.

The her in you may have to shift a bit to make room for IBD sometimes, but you are still in there.

Serve your soul just as you serve your IBD. Nurture her and she will give back to you 10-fold.

You are not your body.

You are the living, breathing, bounty of all that is good in the world.

You are worthy of love, and praise, and grace, and beauty, happiness, stillness.

You are worthy of genuine care and emotion.

Your identity is more than the woman with IBD.

It’s OK to wonder who you are without your diagnosis.

It’s OK to feel fearful about the unknown of who this person is, of who this person is yet to become, let the unknown fear in.

It’s OK to feel fearful about the known, fearful of what you are dealing with, what you are living with on a daily basis, let the known fear in.

Every ache and pain I experience may not be related to my IBD, because I am a whole person with other challenges and other life experiences.

My diagnosis does not own me.

I am open to discovering who I am apart from IBD.

I am not my illness.

I am not my body.

My identity is more than the woman with IBD.

I will find light.

I will find hope.

I will find balance.

I will find health.

I will find me.

This is the perfect way to end today my friend. Come back to this when you need a reminder of all that you are, all that you are destined to be. It’s waiting here for you. Until we meet again, I’m wishing you a cheeky and healthy gut healing journey.

Chat soon!

These statements have not been evaluated by the Food and Drug Administration.
This podcast, video, and blog post is not intended to diagnose, treat, cure, or prevent any disease.

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