Living with chronic ITP is tuff and nothing is tuffer than trying to get others to understand what you are experiencing. The hardest thing for outsiders to overcome is one the fact that you look healthy and two we grow up in a society that teaches us that when we are sick, we treat it and then we are sick no more. However ITP is an invisible illness which means you cannot see it by looking at someone and chronic conditions don't just go away. Therefore with no education on your condition people can totally say the most inappropriate things.
For those who have a loved one or friend suffering from ITP, deep down inside we know you don't mean to hurt us with some of the things that may come out of your mouth however please note we are super sensitive. So from an ITP patients prospective what shouldn't you say to someone with ITP? Let's find out;
1) Can't be that bad you don't look sick
This is the ultimate back handed comment and really pisses ITP patients off. Ever heard the saying "don't judge a book by its cover" well this saying comes into play right here. To educate you ITP is pretty much an invisible illness so although at times it may pop out its ugliness through bruising or petechiae spots majority of the time it hides inside the body. Therefore the suffering is done on the inside. So to tell us it's not that bad is pretty much disregarding our condition and boy does that makes us angry.
2) Oh yeah I know someone who died from ITP
No jokes someone actually said this to me in the height of my early days when I didn't know much about my illness. I totally panicked and although what they had said was the truth their family member did die from ITP (please note they refused treatment when it was needed) it just was something that didn't need to be said.
3) Everyone gets tired
Yep I am pretty sure everyone has the ability to get tired. However the difference between someone who is suffering from ITP and a healthy individual is the level of fatigue. When someone with ITP pushes themselves too far past the fatigue point that's when further complications appear and a good nights sleep won't be all that they require. So although granted you may get tired from time to time, the fact is the consequences of your fatigue compared to someone with ITP is a whole different ball game.
4) You'll be right
You'll be right is an aussie's way of saying "whatever is wrong will fix itself, try to relax". I'm sure everyone who says this does mean well however it can come across like you are dismissing the ITP patients condition or comparing it to a common cold. Just to be clear no she won't be right mate and she is up shit creek without a paddle. Meaning you would not want to be in the same situation and it is actually pretty serious.
5) At least it's not cancer
Granted things could be must worse and for some of us we are fortunate that our ITP is not linked to cancer. However are you certain the ITP patients condition is not linked to cancer? Be very careful here some cancer patients end up with ITP and some people who think they only have ITP end up with cancer. Not to mention ITP has some very similar symptoms to leukemia.
6) You think you're tired
Pause..... go back to point #3
7) Why haven't you tried.....
Yoga, vegan diet, magnets, papaya leaf extract etc. Now whilst many ITP patients are open minded when it comes to natural remedies and we really do want to find something that will give us some relief. It can sometimes become a little overwhelming listening to everyone's input not to mention it gets a little awkward when some people pressure you and it's like you have to defend yourself as to why you haven't taken every option that has been made available to you. Plus sometimes us ITP patients have to evaluate the options to see if that method is suited to our circumstances or at times have to review if there is sufficient evidence to prove that what you have offered may actually help. Plus we also have to talk to our doctors before putting anything into our bodies because that is the most sensible thing to do. So please take a moment, be patient and also do you research before offering suggestions.
8) It's probably due to stress..... you should just stop stressing
You know what happens when people tell you to stop stressing? You start stressing over the fact that you may be stressing. It's like having an argument with your partner and in the heat of an argument your partner tells you to relax. Do you actually relax or does that aggravate you more? Now whilst I think this comment is actually valid just be sure it comes up at the right time. When the ITP patient isn't stressed.
9) You're always sick or you're always tired
Oh really you noticed that did you? Funny thing about chronic ITP is that it doesn't just go away. The word chronic actually means persisting, for a long time or constantly reoccurring.
10) Just push through it
Just so we are clear everyday you see me.... that's me pushing through. There are also limits and consequences when we push past those limits. For an ITP patient they know their limits and they know if they push past those limits there's a much bigger recovery time required. So just like you wouldn't tell Usian Bolt to run faster don't tell an ITP patient to push themselves harder.
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