Digital Sisterhood Month’s Guest Blogger Series – Dr. Katina Rae Stapleton on the Power of the Internet & Social Media in Her Health Journey


Katina Stapleton

Meet Dr. Katina Rae Stapleton

Dr. Katina Rae Stapleton is a political scientist who was diagnosed with lupus as a teen. Through her blog Butterfly Lessons: Living a Fabulous Life with Lupus, she encourages people with lupus to live their dreams. She can be contacted at Katina@katinaraestapleton.com and as @ButterflyLesson and @KRSProf on Twitter.

Katina’s Guest Blog Post: The Power of the Internet and Social Media in Her Health Journey

Since I was a little girl, I always wanted to be smart, successful, and fabulous. I was thrown for a loop during my early teens when I noticed that I felt sick much of the time. In middle school I started having daily headaches, strange rashes, and painful joints. By my freshman year in high school, I was also tired all the time. My parents and doctors were very concerned about my health. After numerous tests, I was finally diagnosed with systemic lupus erythematous, a chronic immune disorder in which your body’s immune system becomes confused and attacks healthy tissues. Every case of lupus is different. The disorder can affect any part of the body, but symptoms are commonly seen in the skin, joints, and/or organs. It is estimated that 5 million people around the world have lupus, most of whom are women. While the disease can affect men, children, and teens, lupus disproportionately strikes women of childbearing age (15-44). People of all races and ethnicities can develop lupus, but women of color are 2-3 times more likely to develop the disease.

One of my greatest fears as a teen with lupus was that the illness would mean the end of all of my dreams. I am excited to say that over twenty years later, I have lived a great life despite having a chronic illness. I graduated from high school and college, went on to earn a doctorate in Political Science from Duke University, and became an assistant professor at a major university. Currently, I work for full time for the federal government. Along the way, I learned many lessons about how to manage the disease, seek environments that allows me to thrive, and have learned how to modify my life in ways that acknowledge having a chronic illness without being defined by it.

The internet has provided women with chronic illness a means to connect in ways that did not exist before. When I was young, in-person support groups were the main option for finding others who shared your condition.  About a year ago, I launched the blog Butterfly Lessons: Living a Fabulous Life with Lupus (http://butterflylessons.com) to encourage others with lupus to live out their dreams. The blog is a mix of personal stories and practical tips on living with lupus.

One of the underlying themes of the blog is for people with lupus to work on eliminating disease-related barriers that are holding them back from having the most fabulous life possible.  One of my favorite “Butterfly Lessons” is about dealing with the practical problems caused by chronic fatigue, a common symptom of lupus.  When I am lupus-tired (exhausted, drained, miserable), I do not have the energy to do anything more than make a list of my chores. In the past, I used to either a) let my home collapse under a pile of clutter or b) exhaust myself trying to clean even though I knew that I did not actually have the spare energy to do so.  To make the situation worse, I always felt bad no matter which decision I made. If I ignored the mess, I felt lazy (or like a domestic failure), but if I tried to clean (or even do laundry), I often over-did it and caused a lupus flare. My Butterfly Lesson is that it is ok to ask others for help (even if you have to pay for it). Having others do chores that you do not have the energy to do yourself is awesome, not something to feel bad about.

Another Butterfly Lesson involves learning how to prioritize activities. When you have limited energy, it is important to decide what is really important to you and what is not. Once you have figured out how to differentiate the two categories, the next step is to get rid of activities that don’t belong. I learned this lesson the hard way. I was so overscheduled that I was not getting the rest that lupus demands. Last fall I took a three month break from my activities outside of work. Every day I came home and rested. It was great! By thinning out my schedule, I regained the energy I needed to actually enjoy my life. Then I added back some activities, but with a more reasonable schedule.

I think the most important Butterfly Lesson that I try to continually share is that having lupus does not mean the end of your dreams.  In many (if not most) situations, it is possible to find a way to fulfill your dreams within the context of having a chronic illness. For example, I have always wanted to be a world traveler, but am terrified that I will get sick away from home.  After facing my fears, I have successfully traveled to Europe, the Caribbean, and across America (even Hawaii & Alaska!). I made sure that before every trip that I consulted with my doctors. Where appropriate, I purchased trip insurance. I planned the trips so that I could minimize exposure to the sun and cold. What I found most useful was planning for proper rest on the trip in advance. I especially love cruises because I can always go back to my cabin and rest without disrupting the trip for my traveling companions.

Digital Sisterhood Month 2011’s theme “Celebrate the 4 Fs of Women’s Health: Feelings, Food, Fitness & Fierce Living” resonates with me because fierceness is a quality that people with lupus can really use. It takes a certain courage and willingness to take on the challenges to live with the disease successfully.  For example, fierceness can be insisting something is wrong (when others tell you it is all in your head) or it can be shaving off all of your hair after lupus causes it to fall out.

Across the Internet, you will find a “Digital Sisterhood” of blogs like Butterfly Lessons that are raising awareness of lupus and encouraging women with chronic illnesses to be fierce in their own ways. While each blog is different, all aim to create a virtual community for women with chronic illnesses to share our stories, learn from each other, and provide much needed support. Some of my digital inspirations are Jenni Prokopy (http://ChronicBabe.com), Christine Miserandino (http://ButYouDontLookSick.com), Lisa Copen (http://invisibleillnessweek.com), Karen M. DiVito (http://www.livingchronicallyfabulous.com), and Sara Gorman (http://despitelupus.com). Without them, I would not have had the courage to share my own story online.

Social networks like Twitter and Facebook also provide a great forum for people with chronic illnesses to connect with each other. Lupus group exists on both platforms. To join the conversation about lupus on Twitter, search using the hashtag #lupus. For more general discussions of living with chronic illness, use #spoonies (inspired by Christine Miserandino’s personal lupus story called the “Spoon Theory” – http://bit.ly/cPitsM).

In additional to the Butterfly Lessons blog, I tweet about lupus as @Butterflylesson and have a DC/MD/VA-based Meet-up group called Butterfly Socials (http://www.meetup.com/Butterfly-Socials-DC-Metro-Meetup-for-ppl-with-Lupus/).

Organizations like the Lupus Foundation of America (http://lupus.org), and the Lupus Alliance of America (http://www.lupusalliance.org/) also have websites that share valuable information about the disease, connect people with local support, and create an online-lupus community.

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