“It takes a village” is a phrase commonly used when referring to raising children. I don’t have any children, but I do have a village. My “village” has certainly played a huge role in my idiopathic thrombocytopenic purpura (ITP) journey.
I never realized how important it was to have a strong support system until I desperately needed one. Being diagnosed with a rare blood disease, I was overwhelmed with feelings and worries. I felt so alone, yet I didn’t want to burden anyone with my situation. Then I slowly began to realize I wasn’t a burden and I needed to lean on those around me.
Read more about HCP resources for ITP
I’m very fortunate to have people who care so much about me and my well-being. My village consisted of my wonderful family, my loving husband, my supportive friends, my understanding boss, and an amazing ITP social media community. Each person played a different role in my diagnosis and journey. Each person offered support to me in different ways. And others I would go to when I was frustrated with my hematologist or others I would go to when I was angry at my body and so mad this was happening.
All offered different kinds of encouragement and understanding but more than anything, they all supported me. My village helped me keep it together, when I felt like my life was in shambles, they were the glue to put me back together. Everyone deserves a good support system.
Throughout my journey, I was also introduced to the Platelet Disorder Support Association (PDSA) and found an abundance of support through that community as well. Because I believed so passionately in people having a support system, I asked how I could get more involved. I began facilitating online support groups once a month. I hoped that people just like me could find comfort, even if in just that short 2-hour meeting.
I always look forward to the first Saturday of every month. I get to see some familiar faces and some new faces, listen to others’ stories, share similar experiences, and offer the love and support we all deserve.
In a perfect world, we all would have a village, but in reality, many people don’t. When I started having conversations with other ITP warriors, my soul just ached for those that didn’t have anyone supporting them. I felt their pain of not having people understand what they were going through. That is what inspired me to start sharing my story. If I could help just one person with ITP to understand that they aren’t alone, then my heart is happy.
