Growing up with CMV

By Ellie Wheatley 

I want to share my experience growing up with congenital CMV and why awareness and prevention matter so much. 

Growing up, I wish people had understood more about how CMV affects different people in different ways. 

I wish people had understood that living with it looks different for everybody and that I have my own feelings and thoughts about what it’s like. I also wish medical professionals had taken the time to really explain what the condition was and why it affected me in certain ways. Growing up, I don’t think I fully understood what CMV was or why it gave me problems. 

Now that I’m an adult, CMV still shapes the way I see myself and my independence.

I know that life won’t be the same for me as it is for other adults, and there will always be a sense of wonder about what life could have looked like if I hadn’t had CMV. CMV often varies so much that I wish people wouldn’t presume what my level of independence looks like. 

There have been moments when the impacts of CMV really stood out, especially at school. CMV made me a huge target because I was weird, different, and I didn’t try to be ‘normal’ like society wanted me to be. However, I also developed a level of determination and persistence that I probably wouldn’t have had without CMV, and that has helped me hugely in proving the doubters wrong. 

If I could speak directly to expectant parents and healthcare professionals, this is what I would say: 

To expectant parents: please look at risk reduction advice and read the CMV Action website. Risk reduction is really simple, yet really important. 

To healthcare professionals: please educate yourself if you don’t know about CMV. Tell your patients about it, because my story doesn’t have to end up being someone else’s. 

I hope my message reminds everyone how important awareness, education, and prevention are. 

Ellie is a passionate advocate for CMV awareness

follow and support her work on Instagram @crushcmvwithme