ITP Awareness… Is that what I really want?

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In a couple of days it will be ITP Awareness day. Every year ITP Awareness gets bigger and bigger. The 29th of September is Sport Purple for Platelets day in America and September is a month long ITP Awareness festival. Every year I’ve supported the cause; I’ve posted about ITP on social media and shared my experience; I’ve made cupcakes with little blood cells on them, and a paper mache a pinata in the shape of a spleen, I’ve even donated a little cash to the cause.

But this year, I find myself in a very different mood. This year, as I see posts and messages pop up online about ITP awareness, I find myself exhausted by the thought of it. I wonder, “What is it all for?”

According to a commentary published in the AMERICAN JOURNAL of Public Healththe United States has almost 200 official “health awareness days.” That is a lot of awareness. I wonder if we will ever really be heard amoung the shouting for awareness of this disease, or that disorder? And if we are heard…will it even matter?

ITP is a fairly rare autoimmune disorder – so it stands to reason that not many people know about it. But it also makes me think, do many people really need to know about it?

Times have changed in the last 10 years. There is a lot of ITP information on the internet (this website included). If you do have ITP then a simple google search can provide a great deal of reading material and advice. Isn’t that enough?

ITP awareness not only raises awareness of ITP in the outside world, it also raises awareness of ITP for me. It reminds me of everything I go through. I remember it is my job to teach people about ITP, my job to share the news, spread the word, raise the money and talk to people about how crappy and exhausting and weird life with ITP can be.

This year, I don’t want to.

I want to keep ITP in the back of my mind. I want to forget about it. I like not always thinking about it. I like that people do not know about me and my disorder. I like having a small amount of medical anonymity. I like that ITP is an invisible illness that others cannot immediately judge me on. I like not talking about it, and living with it in private.

I know this is a terrible way to think, because awareness days ultimately lead to fundraising, research and money for ITP.

I’m just in a bad mood.

Feature image from an unknown source.

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

2 thoughts on “ITP Awareness… Is that what I really want?

    mira says:

    You are human and if it makes any difference, I stand with you in the feeling of sometimes it’s just nice to be you and not the person with the illness. Sometimes it would be nice to have those days where you don’t think about it though it is usually on the back of your mind or the forefront.

    Don says:

    The way you feel is not terrible, its a response to living everyday with this lousy disease.
    Sometimes I too want to forget about ITP, and the effects it has on my day to day life. I rarely talk to anyone about it, and even if I feel the need to, its rare to find anyone who understands, or has even heard of ITP.

    Your feelings are normal, I and I am sure others have them too.

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