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I’m Sick, But I’m Not Sick

I’m sick but I’m not sick. How do I rationalize that? How do I not hold a twisted form of guilt about that?

That’s been a tough one.

Feelings of a flare versus feelings of remission

Over the years the feelings have fluctuated. I’ve been in the depths of a killer flare. I’ve seen others healthy and felt that pang of anger, resentment, and guilt. I’ve also been the one in remission. I’ve felt guilty for being both overly appreciative of my health to then feeling guilty for not appreciating it enough.

Might as well accept that you are never going to win. LOL.

Lacking authenticity

Being sick but not sick also has some other things that others may not understand. You might not realize this until I spill it here, but you kind of lose your authenticity and your truth in saying that you are still sick.

It’s unfair. It’s twisted.

Justifying remission

You see, I have Crohn’s Disease but I am in remission. Instantly, in saying that, I feel this tugging internally that I need to somehow justify that I may be in remission, but I’m not healthy. I’m just a healthy version of me.

I may be in remission, but I am also missing a huge amount of bowel. I also live with a permanent ileostomy. That means my absorption is slim to none. My body works extra hard to digest food. I get exhausted just from eating and need a nap. I’m permanently down spoons. I just don’t do it while battling the excruciating twisting and torture of an ulcerated bowel.

Others forget my limitations

I’ve been healthy so long and don’t look sick that people forget that I have limitations. They just see me. Just as I present it to them.

My boss is also one of my best friends. I’ve been healthy enough lately to consider coming back to work full time. We were discussing my fears about doing that. I currently don’t work every Wednesday. The business needs me full time but I’m afraid of burning out and crashing. I’m afraid of losing how good this has been on my body. I’ve been able to accrue sick leave for once!!

She was talking about how everyone is tired and wishes that they were able to only work 4 days a week. It wasn’t malicious, she just completely forgot that I’m not “like everyone else”. I reminded her that I’m not the same as everyone else. I’m missing a lot more internally.

The sacrifices to get to this healthy version

I’ve sacrificed a lot to be a healthy version of me. I’ve battled between my mind and my body. My body winning. I’ve missed out on financial opportunities to be the best version of me. While that meant that in some ways I’ve won, in other ways I’ve lost. I’ve been seen as healthy and capable. So then why do I need those allowances?! *insert throwing up of the hands emoji*

When I question myself as others do, I have to remind myself that I’ve lost a lot of battles before I was lucky to win this one. I’ve still got a lot of battles to fight over the next 30 years. Some I’ll win, some I’ll lose. Until then, I’ll search for a balance.

I’m not healthy like them. I am a healthy version of me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • MegA
    5 months ago

    I loved everything you said! Well put! Thank you.

  • Krystal Miller author
    5 months ago

    Thank you! I’m honored that it resonated with you!

  • Amanda Osowski moderator
    5 months ago

    This is so well put – I think about these things often!

    Warmly,
    Amanda (team member)

  • Krystal Miller author
    5 months ago

    Thank you Amanda. Its taken me a long time to be so upfront and no apologies for my few limitations.

  • Lolo
    5 months ago

    You’ve made an excellent observation and articulated it perfectly. “I’m not healthy like them. I am a healthy version of me.” I’ve had Crohn’s for 33 years and have had 6 bowel resections. While I may look fine, I am fatigued most of the time. Planning to do more than one activity a day (yoga, shopping, mah jongg, movies, happy hour) is out of the question. But I’m thankful that my family and friends are understanding. Good luck to us all.

  • Krystal Miller author
    5 months ago

    Thank you! it is my fave quote! 😉
    Its not easy to find a balance or even remember your own limitations at times!

  • ShelbyComito moderator
    5 months ago

    I’m so glad this article resonated with you @lolo! I love that line, too. It’s so easy to get caught up comparing ourselves to others’ when really we need to focus on what works for ourselves. I’m so glad you know your body well enough to keep your activities limited and I’m grateful to hear you have a support system that understands. Thank you for taking the time to comment and share your thoughts! Best, Shelby, (InflammatoryBowelDisease.net Team Member)

  • S406
    5 months ago

    Thank you for this post. – very well put! I actually created an account because of your post. I have had Crohn’s since I was 6yrs old and am now 34. I have largely avoided forums, sessions and reaching out to those with Crohn’s because I didn’t want to dwell in my disease but stay upbeat and positive. But reading posts on this site last night have been so helpful!

    I have been healthy not healthy most of my life. So much so, that many doctors felt my Crohn’s was in remission but that I was struggling with chronic IBS, even though I had a 12″ blockage removed at 10yrs and another 6″ at 19yrs. In addition, the doctors could press on the exact same spot that was bothering me every single apt but all tests in Portland and even at Mayo came back clear. I “looked” fine to them. I always smile, I stay upbeat, and I made a choice early on that Crohn’s was what I have, not who I am.

    One doctor, my first at 6yrs old and the one who knows me best, didn’t give up on me, even though he was at a loss. I started Entyvio about 2 years ago and last year was my best year since my “remission” between 10 and 12yrs of age. My doctor was baffled…clearly my Crohn’s was a real thing all those years.

    I love how you put “I am not healthy like you, I am a healthy version of me”. I am using that from now on! When I’d say I was “fine” everyone would say, “she always says that even when she’s sick”. But I also felt like a downer by always telling the truth! Your phrase is a positive and truthful response. Keep the schedule in work and life that is the most balanced…do not sacrifice your health…no job is worth that.

  • Krystal Miller author
    5 months ago

    Wow! thank you! im honored that my post motivated you to create an account! love it!
    I think by reminding people that we are healthy versions of us, but not of them, continues to keep healthy and clear boundaries up 🙂 Sometimes even for ourselves 😉

  • thedancingcrohnie moderator
    5 months ago

    Well put. IBD can definitely be tricky to maneuver and I think you have shed light on a very important factor. We may reach remission and find relief from most of our symptoms but that doesn’t mean we are completely healthy.

    And like you say, we may look healthy but for most that is not the case internally. For the rest of our lives we have to be focused on taking care of ourselves for the sake of our health. And I commend you for standing your ground with your boss and reminding him/her that you are very different internally which is why one day off work is crucial for you. I hope you continue with that schedule, as stress is such a huge factor in our health!

    May you continue to feel better and I wish you the best!

    Always dancing,
    Elizabeth (team member)

  • Krystal Miller author
    5 months ago

    Absolutely! thank you for always replying to my articles 🙂

  • thedancingcrohnie moderator
    5 months ago

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