My Husband, Christopher, was in China for work when I learned about lipedema. I was in bed, scrolling through my phone, after finally getting my kids to sleep. Chris' work trip was to Taiwan but he and his boss took a couple days to lay some ground work in mainland China. While there, I knew I'd hear less from Christopher. This was such an incredible distance and his access to the internet would be spotty until they got back to Taiwan. I saw a picture and an article in my newsfeed. It was like reading while being slightly electrocuted. I immediately began googling and reading everything I could. I was up till the wee hours. I had to get my kids off to school the next day but I could not stop reading. Finally, I had some answers to questions that had plagued me since I could remember. Can you imagine how it felt to hold this information till my husband landed safely back stateside? I needed to tell him face to face, I needed to show him all the pictures, all the articles. I needed to read his face when I said it all out loud.
Lipedema isn't well understood. A blood test won't confirm you have it. It requires a clinical diagnosis. I'm one of the luckier patients. When I learned about lipedema, I knew I had it. First I shared it all with Christopher, then I took all my research to my doctor. She listened. She did more research. She then did a clinical test and diagnosed me. Since then I've seen three more specialists who have confirmed my diagnosis, but sadly many people don't get past the first doctor. Doctors who don't know about this are in a position to heap on more fat shame and send people in pain on their way, very alone.
Weeks after my diagnosis, and hours and hours of more research and support groups, I was in contact with the very woman the NPR article was about. Marlene Simpson was traveling to the Bay Area from Sacramento and we spent a couple hours together. She shared a great deal of helpful information with me. She helped me not feel alone.
The women I have met as a result of this disease, have been a bright spot in a profound life challenge.
Thank you NPR for highlighting our story. Thank you Marlene for being a lipedema ambassador. Thank you Dr. Sadikovic for hearing me and educating yourself so you could help me. Thank you to the community of women who have listened to me, validated me, helped me sort through hard questions, and extended open arms of sincere friendship.