: October 20, 2018 :
Happy Thursday, everyone! In honor of the ushering in of November and the changing of the seasons, I’d like to change things up for today’s blog post!
I normally compose longer posts with advice and tips from something I’ve learned along my journey. But, today’s will be a little different.
It’s more of a musing, or maybe a page you’d tear out from a diary. In fact, it is in my journal. But throughout these past few weeks, I’ve found myself reverting back to this thought, so I felt like I needed to share it, process it alongside others, and ask for advice and insight from you under the Let’s Chat section!
Here’s the Backstory
I met with my GI doctor a few weeks for a normal check-in; I haven’t shared this too thoroughly on the blog yet, but I recently started another biologic, called Entyvio.
We were discussing how I felt after getting my second dosage of Entyvio on September 25th, compared to how I felt in the hospital the last week of August.
I told her I feel significantly better: the stabbing pains like someone mistook my colon for a knife sharpener disappeared the day I started Entyvio, which was September 12th.
Also, the extremely urgent and undeniable demands to sprint to the toilet are now more like shouts of advice, merely suggesting, “Jenna, I recommend you come to the bathroom in the next five minutes or so!”
So, I let her know I feel much better, yet still not normal. Something still isn’t quite right. Then, my doctor said something that would shift my worldview.
My doctor locked eyes with me and in a serious but nurturing tone said,
“Jenna, I’ve been thinking about you a lot. You’ve been sick for so long, I’m wondering if you remember what it’s like to feel normal.”
I threw my head back and chuckled, mainly to hide the tears that unexpectedly flooded my eyes.
Not tears of frustration or anger. Not tears of bitterness caused by words that were ignorant or uncalled-for or that over-stepped boundaries; these words were none of these things.
These words were truth. I needed to hear them. They were a truth I didn’t realize I had been denying.
The tears were from this epiphany: my definition of “good” or my “significant improvement” might, in reality, be very poor in comparison to what normal healthiness is.
Let me be clear that by no means am I diminishing my or anyone’s improvement in the midst of a medical journey; improvements, no matter how small, bring hope and joy and quality of life.
What I am saying is that we can’t lose sight on how much better our lives could be. We can’t—for lack of a better term—settle with this substandard improvement in the long run.
I needed this reminder to bring me back to reality. I had lost sight of the life I could be living.
I needed to be reminded that feeling “well enough” because something “still wasn’t right” isn’t a mentally healthy way to live. I was starting to settle and just accept things like, “I feel…
- Well enough to go to school this week.
- Less pain today to not cancel plans with my friends this time.
- Enough energy to go grocery shopping after class.
- Awake enough to write this blog post at 8pm.
[Insert your truth here.]
Anyone in your own health journey—IBD, mental health, PSC, and others—we need to keep fighting. You are worth the fight.
My doctor’s words gave me hope for my continuing journey toward remission. Either…
- Entyvio will kick in soon (I need one more dose before it could put me in remission), or
- I can consider a colectomy and remove the colon causing all this chaos, or,
- I can consider trying other biologics and medications on the market!
Whichever path I end up choosing, her words reminded me to keep fighting. To not lose sight of the big picture. They reminded me that I’m worth the time, the effort, the fees in doctor visits to experience again what it’s like to feel normal.
1. Your Worth
In the midst of a medical journey, it’s easy to lose sight of your worth. It’s easy to fall into the trap that pursuing health is a burden to others.
I hope this is a gentle reminder that you are worth the:
- The effort,
- The fees in doctor visits,
- The sleepless nights,
- The not-so-good days,
- The endless pillboxes of medications,
- Anything in your medical journey that may make you feel only “good enough.”
2. What You Deserve
You deserve to be your healthiest self. And I recognize that for most of us out there—myself included—the disease path won’t allow us to return to the healthiness we knew before the disease.
But we still need to strive for our “new normal.” Yes, even that’s worth fighting for!
It’s easy to settle for feeling “well enough” instead trying new things, like new treatments, diets, medications, support groups, etc. Maybe these things are expensive, or out of your comfort zone.
For example, getting my entire colon removed would absolutely be out of my comfort zone! But my doctor’s words inspired me to consider it because it would mean pursuing healthiness instead of settling with a medication that isn’t giving me the life that I know is possible.
I hope my doctor’s words inspire you to reflect on your own medical journey and ask yourself if you’re settling for a life less than what you deserve simply because it’s easier or less scary than trying something new.
3. Emotional & Mental Health
I hope that if you feel yourself starting to feel weighed down by fear, guilt, or hopelessness that you reach out to someone in your support group.
You are not meant to mull over feelings like this alone.
You deserve to live your normal life, not settle for one that’s “good enough.”
Even if your healthiest self is your “new normal,” it’s worth the fight. A new normal is better than settling for less than you deserve.
I really want to hear from you! This topic of remembering the fight and not settling is universal across all types of medical situations. But this topic can be weighty. It can swell in your heart or belly and stir up negative feelings like fear, guilt, or hopelessness. That’s why I decided to quit ruminating on it this week and share it with you all.
- In your medical journey—IBD-related or not!—have you heard any words or had any epiphanies that have reminded or encouraged you to keep fighting?
- How do you keep sight on the end goal of remission despite setbacks, pain, exhaustion, bad days, etc?
- I’d love to hear your story, ideas, and advice in the comments below or in The Comical Colon’s private Facebook group! You can also email directly me at Jenna@TheComicalColon.com.
. . .
I truly believe that the way to bridge this disease type’s chasm of alienation, fear, being misunderstood, etc. is to engage in community and share our experiences to help others along their journeys. Let’s learn to share our fears, our trials, and our triumphs to find the comical in the deepest, darkest crevices of our guts.