Thank you forum; Creative ways to explain ITP

So, I was diagnosed with ITP over a year ago and it has been quite the emotional and physical battle (as I am sure you all know)! I have a lovely, blessed support system full of people who have NO CLUE what I am going through, how serious it is, and how to even ask me about it. In the beginning I got so tired of explaining the horrible bruises, crazy Prednisone side effects (I am also bipolar), and going to the doctor or going in and out of the hospital that I started telling people I had cancer so they would nod their heads and move on! (I'm snickering as I write this by the way). Anyhoo, the point is, thank you all very much for this new found support system. And thank you to the moderators. I went a little crazy doing all kinds of posting this morning because I can finally talk straight with people who need answers, have answers, and don't give me that weird, confused, pity look. You know the look- imagine your face if you saw sick but happy dog that got stuck sideways and upside down in a fence ("How did he get there?" "He doesn't look like he feels good!" "Maybe we should tell someone he needs to go to a vet!")...

P.S. If you feel like posting the most creative explanation you've given to someone else about ITP or your symptoms, I am sure we could all use a good laugh! I live in the south and people seem to be just a bit more gullible down here- I have claimed cancer, birth marks, but my favorite was when I told a girl I was albino and that's what albino freckles look like (my petechia; I also happened to have dark hair and dark eyes- I am not albino)

At the beginning I would try to explain it, today someone yelled out at me while I was returning a movie at redbox "Ma'am huh come you have all those bruises?". I just said, I don't want to talk about it. I really get sick of trying to explain it to people I've explained it to a hundred times (i.e. my family) who still don't understand why I'm not "cured" and that "it's not that bad," but refuse to talk to my doctor or try to understand the disease. I figure if my platelets are still this low next month I'll just tell everyone I'm dressed as a zombie for Halloween :laugh:

I just say I have a blood disorder. But I've never been asked by a stranger. I think that would be very unusual. It's only friends who have commented on my bruises.

I have never been asked by strangers either. I usually only discussed it with family and close friends if they asked. If not, I never mentioned it. Didn't feel the need.

We had a young woman on the board a few years ago who told about going to a crowded show with her boyfriend. He had his hand on her shoulder so they didn't get separated and she ended up with a hand shaped bruise on her shoulder. People got concerned and she had to explain it a lot.

I can see people asking carefully to make sure you are ok or see if they can help, but shouting at you about bruises? Not cool
Erica

Obviously I just seem to attract weirdos and goofballs... what can I say?

To tell the truth your post shocked me a bit. I would never lie about having cancer, and I guess I'm not the creative type and tend to just go for the truth... boring I know :dry:

Like Ann I would never lie - or joke - about having cancer. There is nothing funny about having cancer!!! Evidently you have never had a family member or one of your patients get cancer.

Blood disorder - not hard to say those 2 little words if someone inquires.

Didn't mean to offend anyone. The cancer comment was actually very early in the course of the disease when I didn't have a good handle on it emotionally. I started this post to say thanks to all of u and to inject what I thought was a little bit of humor...

JJBDVM10 wrote: Obviously I just seem to attract weirdos and goofballs... what can I say?

No, I've got it too. The man who shouted at me was mentally disabled and I am also around a lot of people with mental illnesses who don't understand things very well. I also had that thing happen to me when my boyfriend grabbed my arm a little to hard in a movie theater and it left a bruise. We got a lot of stares, but we decided not to explain it, just say that there was no problem, I wasn't hurt, I bruise easily, as we exited the theater.

If asked, my son always just says that he has a problem with his blood and leaves it at that. He says he has only been asked a couple of times. I was always surprised that we weren't asked more frequently because he used to go swimming a lot covered in bruises and no-one EVER asked!

I would say I am getting prepared for Halloween by being one of the 101 Dalmations!!!!

The one problem I had when I decided just to simply say "blood disorder" years ago when I had my first appearance at the new day place I'm at is everyone got terrified of me because everyone thought I had AIDS, not that people with AIDS should be discriminated against, but obviously there is a lot of difference between AIDS and ITP. I eventually had to explain. Everytime I have a relapse, I have to keep explaining. But you know what? I'm tired of explaining, it's hard enough to go through all the treatments, and have my family yell at me that my doctor should have "cured" me by now. I think I'm done explaining.

tgurin what I would then say if someone looked at me funny - it's not AIDS - and I'd smile and walk away. I've had it for over 20 years and I'm not cured - not sporting any bruises now though to alarm anyone who gets near me, I'm bruise free. After a while you just let things roll off your back - you learn it isn't a big deal what people think.

You don't owe anyone an explanation - and if your family doesn't get it by now they probably won't get it no matter how much you explain or how many websites you send them to to read about ITP. I'm sorry!

I always had the same hang-up. If people knew it was blood-related, they would think it was contagious. I never wanted anyone to treat me different or think of me differently, so I kept it to myself. For me, my health issues are personal and private and people in my life are on a need to know basis. Thankfully, I've never had strangers ask me anything. If they did, I might have said I had an accident and let it go at that.