Having a hidden illness…. it sucks man. No one can see it and a lot of us suffer in silence.  The chronic part takes it to an extreme level.  In 5 more months, I will be going on my 7th year with Crohns Disease.  7 years is a long time, pretty much a couple of months after my diagnosis I felt like I shouldn’t be complaining anymore.  After I started treatment, I started gaining weight and no longer looked the “sick” part.  7 years is a long time to feel sick, long time to complain, so I just shut up.  It becomes tiring to explain over and over again that even though you can’t see what’s wrong, that I do in fact have a horrible disease.  The really shitty part? (Pun intended) This stupid disease will be with me for the rest of my years.

It is hard to voice pain with all of that.  The “you look fine” and the “oh its just a stomach ache” really beats you down after a while.  You just… keep quiet.

I’m really down as of the past few days. A good portion of that is due to my disease.  It’s almost Remicade time, and my symptoms are pretty bad.  On top of pain that makes it hard to walk, my joint pain has spread from my knees and hips to my shoulders.  The fatigue is extreme this time around and eating is again my enemy.  I know that (knock on wood) I will improve a bit after infusion, but it is getting old. 

What can I do?  Call off work?  I’m most definitely sick enough, but if I called off every time I wanted to cry due to pain…. I’d be unemployed.  Do I mope?  I try really hard not too.  Everyone tells me I’m a strong person, and besides, this is my life now.  Do I complain?  7 years is a long time, people get tired of listening to something they can’t understand. 

It’s just difficult sometimes is all..  I am frustrated and depressed.  I’m just tired.


6 thoughts on “Hidden

  1. Being someone with same issues, I know how you feel. MS is a bitch. 5 years of “you look fine” or “we haven’t walked that far” or “why can’t you do this or that”.

    Toughest is on the kids. They know daddy has something, and pushing myself to do things sometimes while rewarding, seems to set me back for days. But…I know the type of person you are…I always will. I understand

  2. This post sums everything up so perfectly – the overall feeling of illness whilst not looking ill and people not believing how sick it can make us. My doctor summed it up pretty well before I had my surgery – he said “even after when you feel you are back to your normal self, remember, your normal self wasn’t healthy and hasn’t been for a while back. What you consider normal and okay isn’t what other people feel like most of the time, it would mean most people had a day in bed” Just keep fighting through and chin up!

    Would love it if you could check out my blog?
    all about how I am coping with living with Crohns, or trying to anyway!

    H x

  3. Hi, I was recently was diagnosed with Crohn’s – just this week in fact, after months of a lot of excruciating pain and losing a lot of weight as well as becoming anaemic – like I wasn’t pale and skinny enough! I already feel like I’m bugging people with complaints of my illness, it’s really hard but it’s nice to see I’m not the only one!
    I just started my own blog, it’s called ‘A Real Pain in the Ass’ every pun intended, hopefully it’ll help me vent. I enjoyed reading yours anyway :)
    Thanks, and take care! x

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