My Life is All Numbers

Hi all,

I'm relatively new to having ITP (diagnosed in January), but I'm starting to feel like this thing has consumed my life. Every time I talk to my family members they want to know what my current blood count is, what medications I'm on, if I have any bruises, etc. I understand they're concerned, but I just desperately want this all to be over, or at least pretend it is until my platelets drop down low again.

My relationship with my grandma has suffered the most: she played a huge role in raising me, and I've always been able to tell her everything. Now when I see it's her calling I don't pick up the phone half the time because I know it'll only lead to an interrogation. And the most irritating part about it is I found out she writes EVERYTHING down. She has my schedule figured out, so she'll time it to call on days when I have an appointment and then write my blood counts down and repeat them back to me the next time she calls. I've tried talking to her about it, but then she started going to my dad (he's a doctor, so he receives copies of all my labs) to get the information she wants anyway. I find myself longing for the days she used to call and tell me about what she was knitting or what her dog did that morning, now it's all about ITP.

I realize things could be a lot worse. I'm back at school, I've been relatively stable for the last month, and I have family and friends who care about me, but it seems like my life has been knocked off its axis and now revolves around whatever my platelet count is, and I'm helpless to do anything about it. Does anyone have any advice about coping with these feelings?

Sorry to hear about this trouble. Some random your email evokes …

Many things in life are a matter of perspective – and different perspectives may or may not result in suffering. So this may be a situation where you cannot control those around you but you can control your responses and thoughts. So you can work on yourself- I’m not sure how exactly…perhaps try to appreciate their motivations are out of concern for you, but try not to let them get you too stressed out.

There are all sorts of ways to address stress explicitly and head-on. Mediation, pursuing spiritual impulses, helping others, doing something that is fun, developing a hobby (do you play an instrument?) - exercise….

That being said, maybe you can tell your family members and grandmother, how their constant interrogation is making you feel. ITP is a serious syndrome, but for the most part is manageable and not life-threatening. Maybe if you emphasize this with your grandmother? I used to stress this with my parents (who are now deceased) along with the info that the bruises don’t hurt at all…

I think having a chronic syndrome or disease raises the issue of self-identity. Perhaps this is something that your interactions with your family member are forcing you to confront? Part of your identity now might be being a person with ITP - but it is essential to realize that you are so much more than that – at least from this email it is clear that you are also a student, a loved grandchild and an articulate writer… I think it is important not to identify too much with the disease.

Good luck !

Mark

I had the same problem when I was first diagnosed, but not as bad. Trying to keep life as normal as possible, I did not want ITP to be the topic of conversation all the time either. Whenever someone asked, I started telling them I was fine. All questions were answered with a firm "I'm fine". They stopped asking. The only people who knew were my husband and kids, plus co-workers who knew I'd leave work for treatments. They didn't badger me, so I didn't care if they knew. If I really needed to talk, I'd come here.