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Learning what Chronic illness is, and what NOT to say about it…

Ohmigod. I just learnt what the term “chronic illness” ACTUALLY means… I know this might seem like a bit of a “DUH?!” moment to some… some of you who know me may even be referring to my statement as another “blonde moment”… but I always thought that it meant someone who was REALLY, badly sick… I didn’t realise it referred to the LONGEVITY of the illness.

Thanks to betterhealth.vic.gov.au, I’ve learnt this:

Chronic illness means the illness is long term. A chronic illness can be stressful and may change the way a person lives and how they relate to others. 

Awwwww shit! I’ve got a chronic illness! It’s long term! I don’t get sick and then it goes away, I mean yes, there are periods of remission, but it’s always there! Lurking in the background, being wonderful on some days and punishing me on other days.

It totally makes sense that I was now having very strange conversations with my superior at work, who I thought was just struggling through the language barrier (and thick accent!) when I was telling her that I had Crohn’s Disease. She had told me that her nephew suffered from this too, and that it’s called “Chronic disease”… I was like, “No, it’s pronounced Crohn’s Disease”… and then we continued correcting each other. But now I realise we were both right, despite me having a giggle behind her back about her telling ME what I had!

Anyway, a friend of mine posted this link on Facebook – about what NOT to say to someone with a Chronic illness, or what they refer to as an “invisible disease”. Basically an invisible disease is the one that doesn’t give you maybe any outward symptoms, but your body or mind inside is doing fucked up things to itself. And it also refers to the fact that you may LOOK fine most of the time, so people are like “you don’t look sick”… yeah, well my liver toxicity is high from all the medication I’m on, my urine is pink as a side effect, my immune system is compromised from the immunosuppressant I am on, my tissue is eating itself because they think its bad causing abscesses, I’ve got setons that are draining, I take a million pills, I have to research menus online to find out what I can eat before going to a dinner party… the list goes on…

Don’t get me wrong, I know that the people around you who don’t understand chronic illness (who is basically ANYONE who does NOT have a chronic illness) such as family and friends are just doing their best to help you. It comes from a wonderful place of caring and trying to take away the pain and suffering by being in DENIAL for you (“you’re just having a bad day”), and so don’t be too unforgiving towards them! Unfortunately, they may know a lot about the disease/illness, and know how you suffer, but no one ACTUALLY understands what it’s like to live through, unless you have the same chronic illness too. This “thing” that just won’t go away, that you have to deal with…

To my beautiful support group around me, thank you for being so amazing! I must say, most of the 15 phrases listed in the link I haven’t heard from them, but from other people who maybe just meet me… It’s a pretty funny read, and may help others know what to say next time you come across someone who also suffers from chronic illness (my new favourite phrase).

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