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Letting family down

For years I have had to cancel plans, stay home during fun events, and be an unreliable person due to my disease. Every time, my family and/or friends are clearly disappointed and lately, are much less accepting. It has taken a huge toll on my mental health. Does anyone here have any advice on how to deal with the stress of this? I feel like all I do is let everyone down and my disease has turned me into a flake against my will.

  1. I am so sorry you are going through this and feeling this way but I want you to know you are not alone. I know many in our community struggle with trying to balance relationships while living with this unpredictable disease. I hope others in our community chime in with what has helped them but I wanted to share this article with you written by one of our advocates in hopes you can take something away from there. It can be so hard trying to explain to others not living with IBD how painful and unpredictable it can be. I hope we can help you find the support you deserve through this and know we get it. Sending hugs your way -Erin (IBD team member)

    1. Thank you, Erin. You’re very kind.

  2. I don't think the fault is yours or is something you should feel guilty about. I know it's easier said than done, and guilt often creeps in.
    Do your family and friends truly understand your disease and how it affects you? Do you think providing them with some information might help? The fact is, IBD does present differently from person to person, so the only journey they really need to understand is yours. Can you sit them down and have a good old heart to heart with them?
    Maybe sharing something like this would be useful:
    I am sorry you are feeling this way, and you really are not alone!
    ~ Sahara (Team member)

    1. Hello My Name Is Simon… I Am In The Same Boat As You… I Have Been Married Since 2018 But We Have Been Together For 17 Years… But Over The Last Couple Of Years My Crohn’s Has Got Worse And Have Some Complications From Crohn’s And My Ileostomy And I Get Exhausted All The Time For No Reason… And I Just Can’t Get This Over To People That I Just Cant Help It And I Am Not Doing This On Purpose But It Just Falls On Closed Ears… And Them The Argument Starts ( That I Don’t Want To Do Anything No More ) Or I Have Changed But In Fact It’s My Illness That Has Changed By Getting Worse… I Want To Do Things And Eat Things And Go Out Like I Used To But I Am Just To Tired At The Moment… My Bloodwork Has Shown That My Bloods Are Really Low On All Aspects… And I Have Just Had 2 Years Worth Of B12 Injections Over 15 Days… But Have Been Told That It Is Going To Take Time To Work Because Of How Unwell I Have Been… And With Family Not Listening To How This Disease Is Making Me ( And Everybody Else Who Suffers With IBD Feel ) It’s Like Hitting A Brick Wall Everyday… And Being Bitched At And Blamed Or Accused All The Time Really Does Play With My Head As It Does Yours And Others Who Are Experiencing The Same Attitudes Off People And Family… It’s Easy For Others To Put Blame And Use Our Illness As A Scapegoat Sometimes… To Which We Tend To Put Up With…

      1. interested to hear if the B12 has helped your energy levels?
        - Sahara (team member)

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