Five Things I Learned Living With ITP

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September is ITP awareness month, so it is only fitting to start off with a list of the things that I have come to discover about life with low platelets. It has been a challenging, difficult and frustrating journey. However, I would be lying if I said I wasn’t a better person because of it.

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  1. Ignorance is bliss, but it can also be deadly. I really didn’t know what I was getting myself into when I snapped this photo. I’m not that person anymore (although I do wish I was that thin). This was the morning I went in the hospital and began a baptism by fire initiation into the world of rare diseases. Now that I know better, I can’t believe I lived through months of nonexistent platelets.
  2. Your true friends will stick with you, no matter where life takes you. After getting sick, I noticed there were three types of people. One set runs away because they don’t want to interact with someone who is ill. Another set just hangs around you to make themselves look better because they’re “supporting” a sick person, but eventually go the way of the first group. The last people standing are the true friends, the “tribe” as I like to call them. They’re the ride or die people who walk with you in your rare disease journey. They won’t understand everything, but they will be sympathetic when you need to vent about how much ITP sucks.
  3. Life will never be the same. No matter how hard I fought to keep my job and retain my independence, being diagnosed with ITP changed all of that. It took me a long time to accept this. Instead of swimming against the currents, I needed to turn around and ride the waves. I will never get my old life back, so I decided to spend my energy building a new one.
  4. You aren’t less because you’re sick. Sometimes I need help, and occasionally I can’t get out of bed. I fought with myself for a while over this. I felt like I wasn’t worth as much to the world as an ITP patient. Once I started sharing my story, I realized that my value as a person increased exponentially. I now have the ability to take my experiences and influence the changes necessary to protect others from the heartbreaks I endured.
  5. Have Fun. Life is short. Take that vacation, hang out with your friends, buy that thing you’ve been wanting. Don’t regret your time here, living with a potentially fatal rare disease will always be in the back of your mind. Fun silences that annoying voice.

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