By definition, 'invisible' means ; "impossible or nearly impossible to see, not prominent or readily noticeable".
This sometimes makes it incredibly difficult to convey how you are feeling to those on the outside.
For example, if I'm feeling rough and weak as a kitten, it's often hard to express this to others, when to them I may look like everything with my bowels is hunky-dory. Nothing out of the ordinary. It can often feel like fighting a losing battle in telling people I feel well below par when there are no visible clues.
On several occasions I've been left feeling as though I'm perhaps faking it, or being a bit over dramatic when in reality my insides feel like I've been run over then reversed over again by several buses. This is when it can get incredibly frustrating and even upsetting at times when you feel you are being forced to justify your illness.
Because Crohn's is not particularly widely publicised, and as common as it can be, from mild to severe cases, it's still considered by some to be a 'taboo' subject. The wide ranging variety of symptoms are not well-known, and as Crohn's can effect every part of the body and affects each patient slightly differently, it can be confusing for many to get to grips with.
As I myself, have encountered the difficulties of these disapproving glances and inappropriate comments related to my 'invisible illness' first hand, I thought I'd share a few scenarios with you all to hopefully help in the event of this awkwardness occurring for you too..
Scenario A)
Q. "But you should be fine now? You've had your operation/ treatment/ hospital stay [delete as appropriate]"
A. "Ah! I see where you are coming from. But as Crohn's Disease is NOT curable.. I'm NOT cured. I feel better, yes, but I still have Crohn's and will have flare-ups from time to time. Thanks for your concern though!"
Scenario B)
Q. "Are you sure you are ill? You look fine to me"
A. "Ah! Again thanks for your concern, but as I have Crohn's Disease it means my symptoms are mainly not visible. The pain and other issues are going on inside at the moment. But i'll take this as a compliment, thank-you!"
Scenario C)
Q. "I saw you out and about yesterday. If your having a flare shouldn't you be in hospital?"
A. "Wow! You are a concerned little bugger aren't you?! Firstly- are you stalking me? If so, please stop. But yes, thanks for your concern, I'm feeling like death but I still have use of my legs and arms, therefore for now, hospital is not necessary, just plenty rest. Thanks! And remember, lay off the stalking, thanks"
Scenario D)
Q. "You've started your medication so you should be feeling better?"
A. "Starting to get a little bit irritated with you now to be honest. Thanks for the unwavering concern in my bowels..Yes I've started my drug trial but drugs often have side effects too, therefore I may feel worse before I start to feel better. Even then, I AM NOT CURED. Back off. Thanks.."
So there you have it, should you find yourself involved in any of the above situations, or anything similar, you'll now know exactly how to handle yourself! Don't thank me, you are so welcome.
It can be very frustrating when people, especially those you've explained it to endless times, just don't seem to get it. Be patient. Remember that these fools may just need a little push to realise that Crohn's is 'invisible' - its a breeze on the outside; disease on the inside. Most of the time that is.
And if they still don't believe you, or doubt your invalid-validity, they are really not worth getting your knickers in a twist over. Don't let other peoples attitudes get on top of you, look after YOU- inside and out. x
No comments:
Post a Comment