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Fear of Expecting the Best

Have you ever been afraid of being positive? Afraid of having high expectations of yourself or your body? Solely because you know better. Have you ever wanted to have faith in a doctor or treatment plan, but simply couldn’t because you didn’t know how? You’re not alone.

The sad reality of living with a chronic condition

Recently I shared a post about this. It was real. Honest and vulnerable. I poured my soul into that blog and Instagram post. To my surprise, I received a lot of support from it and a lot of people found it relatable.

The reality of living with a chronic condition is this:

Every day is different. No two days look exactly the same, and it’s fortunate and unfortunate for us all at once. Fortunate in that the days are so long and at times so challenging, we often wouldn’t choose to repeat it, even if we did have the choice. Unfortunate in that although today isn’t exactly like yesterday as far as symptoms and complications go, difficulties and struggles, stigma and judgment are often the same and difficult to overcome.

Life is hard and people make it harder

If you’re young or even remotely look or seem healthy, people pass judgment on you. You’re considered lazy or get funny looks when you simply park your car in a certain space or use the disabled stall in the bathroom. You live in fear. Fear of judgment and fear of being turned away or let down. We apply for benefits to help, but what’s the point? We often receive the denial faster than we’d received our diagnosis.

Online friends who can relate

Friendships and social media make it easier, but it will never be easy.

You’ve made friends online and they’re amazing. You love them and you feel as if you really have a decent few people who actually understand. It makes life a little easier and gives you something to wake up for in the morning. But it’s still not easy. These people may as well be worlds away and the chances of you meeting them are slim to none. You’ve gone from rarely leaving your home to almost never leaving your home. You cancel on events. You feel guilty, but you honestly just can’t make it. Your condition is so life-consuming, it seems as if you’re in a never ending flare and the term “remission” almost seems like a fairytale.

You can’t imagine another life.

There is no “time off” with IBD

This life is all you know and even when you’re given a shimmer of hope, it’s often to put by the darkness of reality. It feels like you’re drowning, but it never ends. There’s no breaks or vacations from your condition. You’ve prayed for healing so many times it almost feels as if you’re reciting a poem now.

You just want to be normal, but you’re not and you know it. You wish you had the power to change things, but just like your condition, it’s out of your control. You’re frustrated, but you’ve come to accept the sad reality of life with a chronic condition…

For now.

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

  • Bliss
    3 weeks ago

    It helps Alot knowing Others have Same, Symptoms/Life. Does anyone have Pyoderma Gangrenosum? I,m Building a website. For Other Sufferers. Until recently I had No Medical Help/Support and even 3 days ago after an emergency Admission. Told by the,A&E Dr. You,r being Admitted. You Need to be in Hospital. Next Morning at 9.10 am. A Smart Alec MCP. Who Said he,s a Specialist. But didn’t elaborate. Said “I,m discharging you bcause there’s Nothing Medically Wrong with you. This Was after being Barrier Nursed for 36 hrs. Everyone,Gowning Up & I m in a Side Room. Except He Didn’t & I,v Now No immunity. Bcause I,m on Inflixamab. How,Come He Didn’t Cover up & Why does he think I,m Prescribed Inflixamab. If there’s Nothing Medically Wrong. This is the Kind of Dr. We DON’T Need

  • Motown_Mrs
    4 weeks ago

    I completely agree; there is no “time off” with IBD. It’s impossible to forget that you have it. Trips to the bathroom offer a constant reminder. It’s just so emotionally draining, and that’s something that people just really don’t understand.

  • thedancingcrohnie moderator
    4 weeks ago

    Yes! Amen to that.

    IBD is just that. Emotionally draining. It feels like everyday there is something and there is no escaping.

    But know you aren’t alone in feeling this way. You have a community here that understands and whenever you need to vent or just talk to someone, don’t hesitate to message.

    Always dancing,
    Elizabeth (team member)

  • Pam.Kingsland moderator
    4 weeks ago

    You’re absolutely right, @motown_mrs and you’re not alone in this- you’ve found a community that understands! Thank you for being here and sharing with us. Warmly, Pam (team member)

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