April 8, 2021
In honor of National Siblings Day, we’re bringing you the story of TwoBeingHealthy — two sisters and strong social media voices – Kate (30) and Em (33) – who are so close they seem almost like twins. They went to the same college, live together in Seattle, hang out with the same COVID-19 bubble, see the same doctors, and share the same diagnosis – lupus.
Yet despite so many similarities, the two exemplify what makes lupus so complex – how much it differs from person to person. While these sisters thought their journey with lupus would follow the same path, their diseases go in very different directions. The Lupus Research Alliance is attacking this heterogeneity head on with a strategic plan to direct research that will turn the problem of its very complexity into a cure.
Emily was first diagnosed at 17 after months of illness. She felt like she had the flu all the time and couldn’t get out of bed to go to school. When Kate felt similar symptoms when she turned 17, it was easier to diagnose, and the answer was the same. Both have also since been diagnosed with a cluster of chronic disorders their rheumatologists nicknames DAME to refer to Dysautonomia, Autoimmune disease, Mast Cell Activation and Ehlers Danos Syndrome.
These days, Kate suffers most from bad migraines and joint pain while Em is more affected by muscle pain. Also, medications that help one may not help the other.
“Lupus treatment is definitely not a one-size fits all,” commented Kate. Their experience confirms what researchers have long struggled with – the very heterogeneity of lupus. Even two sisters do not have the same lupus experience and cannot be treated in the same way. The Lupus Research Alliance is attacking this heterogeneity head on with a strategic plan to direct research that will turn the problem of its very complexity into a cure.
Both feel lucky to have mutual understanding and support. They cheer each other on – when one is ready to throw in the towel, the other is there with reassurance and encouragement that this will pass and things will get better. But they also have taken that sisterly support online to offer it to others. Under the joint name Two Being Healthy, Kate and Em share their experience on their website, Instagram, and YouTube — what works for them and what doesn’t, products they find helpful, self-help tips and more — with a global network of 35,000 followers.
“We have connected with thousands of similar people and made some good friends. It’s amazing to speak with someone who gets what you mean when you say you don’t feel well. It normalizes the experience and helps take the stigma away of an invisible illness,” said Kate.
Em added, “Before we only had each other. Social media opened up a whole new world to us. There is a sense of comfort of talking with people who are going through a similar battle. They get it. We have had such positive interactions online, everyone is rooting for each other.”
Kate and Em have recently got involved with the Young Leaders Group at the Lupus Research Alliance. “It’s awesome to see other people our age doing well, being productive and, advocating for lupus,” said Em.
In the meantime, these two sisters with all of their shared experiences and differences, are happy to have each other and the support of the lupus community in the journey to Two Being Healthy.