What It’s REALLY Like Having A Chronic Illness

Hey Crohnies!

I thought today I’d share some insight into the life of those of us who have chronic health conditions so maybe those of you who live without them can understand our lives more… or if you’re chronically ill, you can relate to this. I was thinking this week when I had a lot of medical appointments just how many things happen on the regular in my life that I posted on my Instagram and I had SO many DMs saying people related and I thought it’d be funny to share those with you.

I think it’s probably best if I just get started instead of waffling on any more!

You know you’re Chronically Ill when…

… You know everyone at your doctors surgery, pharmacy and hospital clinics name and they know yours.

There’s a reason so many of us refer to our medical team as family, it’s hard not to when you spend so much time with them! Bonus points if they know what’s going on in your life and ask how your holiday/night out/exams went!

… An afternoon nap (or two) is the highlight of the day.

Fatigue is brutal at the best of times so when it’s bad, it’s really bad and naps are essential. When your day consists of pain, fatigue and you’re not able to do much, a nap can be the only thing to give some relief and help the hours pass quicker so you can get the bad day over with as quickly as possible.

… You have days you feel completely alone even when you’re surrounded by people.

One of the hardest parts of being chronically ill is that unless you’re surrounded by friends and family who are going through it too, it can be extremely isolating because you feel like the only person in the world going through your struggles. That’s not to say you don’t have the best support network ever, you totally can do but that doesn’t mean you don’t feel sad and alone sometimes.

… You can’t plan too far in advance but it’s so important to have things to look forward to.

As anyone chronically ill knows, things can change almost instantly and you can go from having a good day to a bad one quickly. There are times you’ll have to miss out on plans, but being included and invited makes all the difference in your mental health.

… Cancelling plans is a regular occurrence.

You arrange to see friends, family, hair/nail appointments and everything in between and get excited for it only to be dealt a crappy hand an have severe symptoms or fatigue that make it impossible to go. It can often cause friction with people as they can think you’re being lazy but self care isn’t optional as it’s the only thing standing between you and a hospital admission.

… You look forward to getting a diagnosis or to find a reason for being unwell so you can prove to yourself you’re not going crazy.

Sometimes you can get increasingly ill but your test results keep coming back normally to the point you are starting to worry it’s all in your head so that the day you are told there’s a reason why you’re not doing good and there’s treatment to help is one to celebrate!

… You have to write down your medication because there’s so much you can lose track.

With always changing dosages and drug variations it can be hard to keep up to date but this is invaluable when you’re asked to recall them!

… Other people tell you “I know how you feel” when they don’t have your illness and just have a regular person sickness that’ll get better in a few days.

That’s great that these people are opening their mind to knowing what you go through but comparing a tummy bug to a disease that can kill you can be the biggest frustration you feel on a daily basis.

… You often get contacted with these “miracle cures” by multi level marketers.

No you don’t have a cure for my incurable disease. No I don’t want to spend my life savings trying it out. No I don’t want your sassy comments when I shut you down for your unsolicited message. Simply put, if these cures worked they’d be given to us by our medical teams.

… You can’t even begin to relate to your peers.

Relationship drama, not knowing what to wear on nights out and hangovers feel like they’re a million miles away from hospitals, surgery and meds.

… You forget your symptoms are actually quite shocking to some people.

I’m guilty of being mid conversation then running out to be sick and coming back pretending nothing happened when the other person is usually like WHAT THE FUCK JUST HAPPENED!

… You celebrate the little things.

You might have got out of bed for the first time in a week other than to go to the bathroom and that is definitely something to be proud of!

… Safe foods can become unsafe foods overnight.

There’s nothing worse than finding that one thing that doesn’t make you feel like you want to throw up but then one day it gives you tummy pain and you need to find a new safe food.

… Your safe foods are really weird!

Have you never saw a girl eat boiled rice with a side of cream of chicken soup before? Never had mashed potatoes for breakfast followed by ice cream?

… You can cope really well with pain.

Oops, I didn’t realise I dug my nails into my hand so hard I broke the skin because I’m in so much pain but you can bet I did it with a smile on my face if I was in public!

… Stuff like bowel habits, blood and gore become dinner conversation.

Did your first poop in a week and want a high five? You can bet that happens in my house over a Sunday roast.

… Time seems to be remembered in terms of what procedures happened.

We must have went away for the night before my last surgery so it was like 5 months ago? Rather than knowing the actual date!

… You measure time by pre and post diagnosis.

Ahh the good old days of PreD when you didn’t have a care in the world.

… You know exactly what they’re talking about on medical shows.

Someone in Grey’s Anatomy struggling to breathe after a car accident? You can bet I’m screaming at the TV that they have a tension pneumothorax.

… You’ve caught up on every available box set.

Trust me with all this time spent lying in bed I’ve watched everything Netflix has on offer and I’m probably binging Stranger Things for the 15th time while I wait on the next weeks releases.

… Your dignity has left the building.

Pretty much all the medical personnel in a 10 mile area have saw my ass, lady bits or boobs and I really don’t even get flustered anymore. It’s just part of the job!

I hope you guys can relate! Obviously not all of these will apply to everyone or every disease but it’s quite interesting to see the similarities from illness to illness! I’ll be back soon with another one of these all about what it’s really like with an ostomy… let me know what you would like to see included and as always if you could share, like and let me know what you think of this post I’d really appreciate it!

Jen x

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