[Journal] The things they don’t tell you about having a chronic illness

An incomplete list of all the things I wish my specialist told me when I learned I had a chronic illness, things I’ve learned in stride and things I wish I knew years ago.

1. It sucks. Majorly.  This doesn’t need to be elaborated.

2. You will crap yourself at some point because of your illness. It could be in the shower.  It could be in the car. It could even be in your own bed, but inevitably you WILL void yourself because you couldn’t make it to the bathroom on time, because you laughed too hard or because your body just went full retard.

3. You will have to deal with some of the most ignorant, judgemental people on the face of this earth, and at least one will be a doctor.

4. Be prepared to be judged by those people wherever you go. I mean WHENEVER you go. Church, the supermarket, the hospital or even your own home. People will constantly compare you with what their understanding of ‘sick’ is. Some will understand and others will be vocal about how you don’t fit their narrow world view.  You need to learn how to move beyond that.

5. Don’t expect the world to understand the daily struggle you go through. Hell,  don’t expect any kind of comprehension in that department and you’ll always be pleasantly surprised.

6. Sometimes you need to vent and just get everything off your chest. Let it hang out, bang pots and pans, swear loudly, run around with your pants on your head. You know what works as a De stress for YOU.

7. Sometimes the best organised plans will all go to shit because your body has had a nana and there’s shit all you can do about it. Learning to accept this is the easy part. Learning not to beat yourself up about it is much harder but just as important.

8. Be prepared to find out who your true friends are. “People come and go but friends stay forever” is a load of horse shit. You will lose friends. Period. Some won’t be able to handle the fact that you can’t always see them. Some will make your illness their problem. Others won’t see it for what it is and, instead, accuse you of faking it for attention.

9. You will learn what ‘normal’ is for you and don’t be swayed by people that think they know better. Seriously. You live in your body 24/7. Listen to input. Be willing to learn and take things on board,  but it is your body.

10. Be prepared for everyone around you to become a medical specialist overnight. You will amass a mental collection of every additive, supplement and therapy known to mankind. You will hear and bout “this new thing” and “that thing that worked for my friend” and even the stuff “my grandmother takes”. Some will insist you’re not sick, you simply have an imbalance of X in your body. Others will tell you it’s because you’re not taking Y.

I will expand more on this later when I’m not busy being violently ill ❤


2 thoughts on “[Journal] The things they don’t tell you about having a chronic illness

    • As someone who also deals with that on occasion, I completely agree. I’ve told my partner on several occasions that I want a Hobbit Hole away from everyone and every thing. Needs internet, though 😛

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