A profile of Karen Lee Richards – part of a series highlighting the accomplishments of ME/CFS Fair Name Implementation Committee (FNIC) members
“If I could give newly diagnosed patients just one piece of advice, it would be to take charge of their own healthcare. But before they can take charge, they need to learn everything they can about their illness. My goal is to help them do that by providing them with the most accurate and up-to-date information available and equipping them with the tools they need to manage their illness.”
- Karen Lee Richards
Karen Lee Richards knows what it’s like to live with Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS). Before these illnesses entered Karen’s life, she had what she refers to as a “typical type A personality.” She worked a job she loved, to the tune of 60 to 80 hours a week, was taking college classes, teaching aerobics, working in community theatre, and raising three teenagers. A busy lady, and a happy lady.
Then, at age 40, she developed mononucleosis, and everything came to a screeching halt. She never seemed to have fully recovered. It became a struggle to get through an average work day, and she was forced to give up pretty much everything else in her life. At that point, her doctor diagnosed her with CFS. She told very few people of this diagnosis because an article in Newsweek had just come out referring to CFS as the “yuppie flu.” It wasn’t considered a legitimate illness, so she didn’t want people to know of her diagnosis.
Karen moved from Tennessee to Florida to be closer to her mother after her father’s death. On the road to Florida, she was in a serious traffic accident. From that point on, she not only lacked energy, but began having a great deal of pain. Unfortunately, it would be several years before she was diagnosed with FM - years during which she struggled with doctors who, when they couldn’t find anything physically wrong, told her she was “just getting older.”
She couldn’t keep up with the active lifestyles of her friends and wondered if everybody her age felt that badly but did a better job of “faking it.” She began to question her sanity and recalls thinking, “If one more doctor says I’m just getting older, I’m going to slap him. At 40, I shouldn’t be feeling this way.” Finally, a friend with FM, who is a nurse, recognized the symptoms and helped Karen find a doctor who could diagnose her accurately.
Karen found there was precious little information available about FM and began an Internet search. Finally, she began to find bits of information. She recalls that time, commenting, “It meant so much to find any information and to be able to communicate with other people who were going through the same things I was. Validation changes your world… I didn’t want others to go through that long period of time like I did, wondering what’s wrong and being afraid.”
Karen developed FM and CFS in 1990, a time when few doctors had even heard of either, a time when being accurately diagnosed was difficult - and treatment? Nearly impossible. Thus began a truly defining period in Karen’s life. Not only did she begin researching these illnesses for her own benefit, she sought out others with similar diagnoses and became an active patient educator and advocate.
Both FM and CFS limit people’s energy, making Karen’s work quite precious indeed. Yet she remains dedicated and motivated by her intimate knowledge of the impact of these diseases and the certainty that education and taking charge of one’s own healthcare can result in a healthier body and higher quality of life.
Karen says, “I talk to and know so many other people who are struggling as much and even more than I am and need to know that there’s hope and a reason to keep trying. I also know how important it is to support one another. A good example is the first time an article came out in the local paper about me and what I was doing with the NFA (National Fibromyalgia Association). Within 24 hours, I had 50 phone calls and almost unanimously, the first thing people said was, ‘Finally, someone who understands!’ We all need somebody to talk to who truly understands, and only one who is going through these illnesses can truly understand.”
How Karen Handles Her Own FM and CFS Flares
Through handling her own flares, Karen finally learned to take the extra time to rest that she needs. Experience taught her that the longer she fights it, the longer it lasts and the worse it gets. Over time, she learned to prevent some flares by pacing herself. She’s learned what she can and can’t do. Those times when she chooses to push too hard or do too much, she pays for it. But normally, if she takes it easy, takes care of herself, and gets extra rest when a flare first starts, it will last for a much shorter time than in years past.
Rest and FM and CFS
Karen has also learned that there’s a really fine line when it comes to FM and rest, and an even finer line with CFS and rest. While getting enough rest is essential, if you stay in bed all the time, you feel even worse. Pain increases, energy decreases. Usually, she finds that when she forces herself to get up and just start moving, she feels a little better. She believes it’s generally beneficial to be as active as possible, just taking care not to overdo.
What Can Others Do to Help?
The biggest thing others can do to help, in Karen’s opinion, is to understand her limitations. For instance, if she has to cancel plans at the last minute, it’s not because she doesn’t want to be with them. It’s just that she’s physically not able. It’s helpful for people to be understanding and sympathetic. What’s not helpful is to make comments such as, “If you’d just exercise more, you’d feel better,” or “If you ate better, you’d feel better.”
The Best Gift?
When asked, “What’s the best gift anyone has offered you since these illnesses hit?” Karen replied, “You know, I think it would have to be their friendship. In spite of limitations, I’m extremely blessed. So many people find their friends drop away because they can’t do the same things they used to do. I have three long-time friends who have stuck by me. We’ve know each other for 35 years, and they have stuck by me, never questioned the validity of my illness, have never changed in their loyalty and love for me.”
The role of her faith is definitely central to everything, and Karen says she’d feel remiss in not mentioning it. Her faith, her spiritual life, gets her through every day and helps keep her from being bitter or angry.
Managing to Work
Karen was asked, “As a single, independent, strong, self-supporting woman, how do you manage to work despite having conditions that are as debilitating as FM and CFS?” Her reply? “I have to admit that having to support myself is a huge motivator. But even if I had the option of not having to work, I would still be involved in advocacy. Initially, I was working a full-time job out in the traditional work force and paying for it with my health. It was extremely difficult. I’d drag myself to work each morning then drag myself home and collapse on the sofa. I was often in tears by the time I got home. I spent every weekend in bed building strength for Monday. I had virtually no life outside of work. I spent what little extra energy I had doing work for the NFA and advocacy.
“I have to say that, in many ways, these illnesses have turned out to be a blessing. It was always my dream to write. I’m not sure I’d have had the courage to make the break from a steady 8 to 5 job in order to write, but physically, I could no longer handle a regular job. So my best option was to pursue a writing career. Since my current interests and knowledge are related to FM and CFS, it all worked out very well. Now, I’m able to keep working because I work from home. I can stop and rest when I need to. I work when I feel best, usually the middle of the night.
"Because I have no one who can financially support me through the long disability process, not working is not an option. Besides, I’m physically and emotionally better off working. Working and focusing on something other than my pain is so beneficial. When I really get into a project, I can sometimes forget my pain for a while.”
In 1997, Karen and Lynne Matallana founded the National Fibromyalgia Association (NFA), a nonprofit organization dedicated to improving the quality of life for people with FM. Karen served as the vice-president of the NFA for eight years. She was instrumental in developing the first magazine dedicated to FM and other invisible illnesses, Fibromyalgia AWARE, in 2002 and was the magazine’s executive editor for the next four years.
In 2006, FM and CFS patients gained valuable online resources when Karen joined About.com as their Guide to Fibromyalgia and Chronic Fatigue Syndrome. A year later Karen left About.com to accept a position as an Expert on the HealthCentral Network’s ChronicPainConnection. On ChronicPainConnection, Karen maintains a blog, writes articles and other valuable content, and works with patients in their online community.
Site producer Dan Marschinke commented, “I can't imagine anyone who is more qualified to give insightful, timely, patient-friendly information to the members of ChronicPainConnection. Since Karen has joined our site as an Expert, she has helped countless people with Fibromyalgia and Chronic Fatigue Syndrome understand their illness and take charge of their health. She is, without a doubt, one of the most influential patient advocates for the “invisible diseases,” and her work has been instrumental in advancing both the public’s and the medical community’s understanding of and attitude towards these conditions.”
As an active patient advocate and writer, Karen also writes for and performs some editorial duties for ProHealth’s FM and ME/CFS newsletters. ProHealth founder Rich Carson spoke of Karen and her work, saying, “Karen Richards is by far the most talented CFS and FM writer I’ve ever had the privilege to work with. She was one of the founders of the FM and CFS patient movement, co-founding the National Fibromyalgia Association. The articles she writes are consistently among the most-read pieces on ImmuneSupport.com out of several thousand. They’re top rated by patients. Karen is warm-hearted, compassionate, delightful and has a winning personality, rich in humor and wisdom.”
In 1998, G. Thomas Love, the mayor of Karen’s hometown, Greeneville, Tennessee, honored Karen and her work by joining more than 50 other mayors across the country in issuing a proclamation declaring May 12 as Fibromyalgia Awareness Day in their respective cities.
What’s In A Name?
Since its launch in August 2006, Karen has been actively involved in the current campaign to change the name of Chronic Fatigue Syndrome. Regarding the name change, Karen wrote:
“The first question to consider is why do most of us want a name change? It’s because the name Chronic Fatigue Syndrome trivializes a serious illness by naming it for one of its symptoms, namely fatigue - a symptom most people experience at some time in their lives. Since CFS is not a medical-sounding name, family members, friends and even doctors tend not to take it seriously.”
Karen says she is proud to be a member of the Fair Name Implementation Committee and stands firmly behind the Name Change Advisory Board’s recommendation to work toward changing CFS to the transitional acronym ME/CFS. As part of her effort to educate patients about the name change and the reasons behind it, Karen wrote two comprehensive articles: “A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name” and “Why ME/CFS? A perfect name isn't necessary, but a respectable name is essential.”
The Merriam-Webster dictionary defines a hero as ”a : a mythological or legendary figure often of divine descent endowed with great strength or ability b : an illustrious warrior c : a man admired for his achievements and noble qualities d : one that shows great courage.” Karen Richards fits all of these definitions. Despite her own health issues, she possesses the strength and courage to support, educate, and lead other patients toward better health and a better quality of life. She’s a fitting example of living a full life despite having debilitating and frequently misunderstood diseases. Karen Lee Richards is indeed a hero in the world of ME/CFS and FM. Brava, Karen.
*Teri Robert is a patient advocate, writer, and the Lead Expert on The HealthCentral Network's MyMigraineConnection site. Her book, "Living well with Migraine Disease and Headaches," was published in 2005 by HarperCollins and remains one of the top sellers in the field.