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In her professional life, Lindsey has worked in the Portland City government, doing housing and economic development planning; been the development director for a Hispanic nonprofit service agency; managed a cable construction company; and co-owned a small publishing company. For many years, Lindsey was a competitive rower and enjoyed mountain biking and cross-country skiing. She is married and is the mother of an 18-year-old son.
Q: What is ME/CFS?
A: ME/CFS is a debilitating disorder affecting all the major systems of the body, including the immune system and autonomic nervous system. It causes symptoms including difficulty focusing or forgetting things, extreme fatigue, feeling very tired for more than 24 hours after physical activity, poor sleep, and muscle and joint achiness, among many other symptoms.
Q: When were you diagnosed with ME/CFS? And how is it diagnosed?
A: I was first diagnosed in the fall of 2002. There is currently no test to diagnose ME/CFS, which sometimes makes diagnosis difficult. In my case, my doctor recognized the symptoms, and, after doing blood tests to rule out other disorders, diagnosed me with ME/CFS.
Q: What symptoms did you experience before being diagnosed?
A: I was a competitive athlete, and I noticed my workouts were becoming more and more difficult. It finally reached the point that a workout would cause significant symptoms, such as major dizziness, sore throat and glands, severely disrupted sleep, and flu-like malaise and fatigue.
Q: Can you tell us how you felt when you were diagnosed with ME/CFS?
A: I was somewhat familiar with ME/CFS from reading occasional articles in the paper. I had also just finished reading Lauren Hillenbrand’s book Seabiscuit, and when the author described her ME/CFS in the author interview, I knew immediately that I had the same disease. When my doctor confirmed the diagnosis, I felt devastated. I perceived that life as I knew it was going to be significantly altered and that I might never feel healthy again.
Q: It’s been 10 years since you were diagnosed. How are you now?
A: I have learned to live with ME/CFS and find joy and meaning even given my significant limitations. I am currently able to be up and about for roughly five hours a day, and then I must rest with my feet up. I don’t ever feel “normal,” and there are many times when I feel quite ill.
Q: How do you manage your symptoms?
A: In some cases, there are drugs to help manage symptoms. For example, I take a drug that helps to raise my blood pressure so I don’t feel dizzy when being upright. There are also drugs I take to help manage my sleep. I also try to work within my limitations so I don’t overdo it, although I have found it very difficult to gauge this day to day. I also maintain a regular practice that improves the mind/body connection, including meditation, which helps me remain calm and centered.
Q: Do you think it is difficult for people to understand ME/CFS and how debilitating it can be?
A: I think even with great empathy, it is impossible to feel what it’s like to be in someone else’s shoes. ME/CFS has been misunderstood for a very long time, and I think many people still underestimate the effect it has on a person’s life. It is also sometimes mistaken for depression, although research shows a biological distinction between depression and ME/CFS. Hopefully that kind of thinking is changing as studies show that ME/CFS is a real disease with very real consequences.
Q: What advice would you give to other women living with ME/CFS?
A: I would first find a doctor who either specializes in ME/CFS or is very knowledgeable about the disease and keeps up with current research. I would also try to educate family and friends, so that they are aware of your limitations and don’t put undue pressure on you to act in a way that is detrimental to your health. It is important to get as much support as possible from your loved ones. I would also figure out what you can do, however small, that brings you joy and fulfillment. Finally, I would explore programs and practices that enhance the mind/body connection.
Q: Is there anything else you’d like to share?
A: Don’t give up hope. There is very important research taking place in the United .States. and around the world that is improving our understanding of ME/CFS. For information about current research, contact the CFIDS Association of America.
The statements and opinions in this interview are those of the interviewee and do not necessarily represent the views of the U.S. Department of Health and Human Services’ Office on Women’s Health.
Content last updated January 06, 2014.