About Lupus

On Change & Lupus — With a Special Announcement from Jessica

Change is a part of life. But whether positive or negative, any transition from the familiar to the unknown can be a challenge.

A recent major change for me has been to leave New York and the S.L.E. Lupus Foundation to pursue new opportunities across the country in California -- which means this will be my last column. It was very difficult for me to say goodbye to my support group members and colleagues. But because I was asked to write a book about coping with lupus, I was relieved that I can continue being a part of the lupus community; I could hold on to something I know while starting a new life.

As I think about transitions, I think about how living with lupus means living with change from the day you first feel symptoms. From feeling like everyone else to knowing that you have a life-long disease. And since being diagnosed with a chronic disease impacts more than your body, you realize how lupus can affect your social life, family life, ability to work, and so on. These are major life changes, and are often associated with grief and loss.

Neither grief nor change is easy, but there are ways to cope. Here are some tips for coping with change that I’ve found helpful as I worked with and learned from people with lupus:

  • Learn to Cope with Grief. To learn more about coping with grief, read my column called “Lupus: The Importance of Grieving”.
  • Remember, Lupus Does Not Define You. Even though change can feel overwhelming, not everything in your life changes. Some parts of your life stay the same and you are still you. My support group members often say, “I have lupus, but lupus doesn’t have me.” Remember that you have lupus, but you are not lupus. Even though it impacts many areas of your life, it does not define your whole life, even if it feels that way sometimes. Hold on to those parts of yourself and your life that have not changed.
  • Meditate to Stay in the Moment. It is common and understandable to feel anxious about lupus and unexpected changes, like not knowing when the next flare will be, or if you will experience new symptoms. To help stop yourself from focusing on your worries and the unexpected changes the future might hold, try mindfulness meditation to stay connected to the present moment. Here is a list of free guided mindfulness meditation audio and video resources.
  • Become an Expert on Lupus. Becoming informed could help you feel more comfortable with your options once you are confronted with change. Call a lupus organization for guidance and information. Find reliable sources online. For example, check the S.L.E. Lupus Foundation website, including this column and Foundation webinars to find out if there’s more information about a topic that has to do with your situation.
  • Learn and Share with Others. While every situation is different, talking with other people living with the disease might help you cope with lupus-related change in your life. Find others to speak with at an in-person or online support group.
  • Build a Coping Toolkit. Change is a constant part of life with lupus. Learn your go-to tools that help when you are faced with expected or unexpected changes. Last year, I gave a webinar called Everyday Living with Lupus: Be Proactive. It offers a variety of suggestions for tools to keep in your toolkit, and covers several topics, including finding support and managing stress.
  • Laugh. Try not to go a day without laughing at least once. The more laughter, the better. Laughter will help buffer life’s challenges.
  • Practice Gratitude. Lastly, thinking about what you can be thankful for is helpful in any situation, especially when feeling overwhelmed. Gratitude helps us refocus our minds and decrease stress.

I am grateful for being met with open arms in the lupus community, and for the wonderful people I have met and gotten to know. Thank you for your readership. It has been a pleasure writing this column and connecting with you in this way. And although I’m changing roles, I’m glad we can continue to stay connected. To keep in touch and to keep updated on my upcoming book, you can follow me on Facebook or LinkedIn