You may not know that the only way to check your platelets with immune thrombocytopenia (ITP) is by having a complete blood count (CBC) done. There is no way for us to check our platelets on our own. ITP in itself, creates a lot of rollercoaster emotions but for some reason, many of us with ITP also really struggle with these CBC tests.
With ITP being so unpredictable, it can be nerve-wracking. You may have excellent blood work 1 week and the next you’re in the hospital or needing treatment. There is a lot of pressure that builds up going in for your CBC test. Is today going to be the day they drop? Will they increase at all? Please just stay in the safe range. My mind races.
Read more about HCP resources for ITP
I spoke with other patients with ITP and asked how they felt prior to their upcoming CBC test. The majority of the answers were nervous and anxious. These feelings are so valid with the many unknowns we face with ITP. Most of these responses were to do with what I mentioned and to sum it up, fear.
The what if? You may have had stable platelets for months or even years but when it’s time for that CBC panel, emotions take over.
Depending on your hematologist, some get their CBC orders scheduled so they know in advance when they’ll be getting it done. This allows the time leading up to the actual CBC for anxiety, worry, and fear to set in. It can become consuming if you aren’t careful and aware.
I’m fortunate that my hematologist gave me an open order so I can go in anytime I want but the majority of other patients with ITP, don’t have this luxury. Even still, I get these feelings. Especially right now as I’ve been watching my platelets drop significantly every week. Usually, the day before I’m a ball of stress, anxiety, worry, and fear. I put so much focus on what those CBC results are going to be and it can affect my mind and body.
From my understanding, there is still no known cause for ITP. However, I’m a firm believer, based on my experience, that stress plays a role in my numbers but how do I not express stress when there is so much unpredictability? How do we not worry when we can’t see many signs?
For me personally, I try to do a few things the day before my CBC. I try to rest as much as I can the day before, this doesn’t mean I lay in bed all day, I just take it a bit easier. When the physical anxiety creeps in, I focus on my breath (deep belly breathing) and remind myself that I am OK.
Sometimes I even put my hand on my heart and tap on it a few times when I remind myself that I’m OK. Something about the physical touch to remind me helps. When the fear creeps into my mind, I remind myself that I’m doing the best that I can with what I have. I also try to get a good night’s sleep, although this is 1 I have yet to master.
There are many aspects surrounding having ITP and CBC panels are 1 of them. I’m finding feelings of anxiety, worry, and nervousness are very common among patients with ITP. These feelings may never go away and that is OK too. This is our life after diagnosis now and we just have to do the best we can.