The disease lupus causes even the most high-functioning people to screech to a halt. At age 45 Dixie Swanson was a super-busy pediatrician and a television medical reporter in Houston, going "110 miles an hour," until, suddenly, she could barely get out of bed. "I was so tired that I'd pour myself a bowl of cereal in the morning and then have to rest, I'd take a shower and then want to lie down before putting on my clothes," she says. "It wasn't ordinary fatigue." Her other symptoms included joint pain ("I'd limp on one leg one day, then the other leg the next") and getting horrible headaches upon any exposure to the sun.
She went to a rheumatologist and was soon diagnosed with lupus, an autoimmune connective tissue disease (translation: the immune system malfunctions and attacks the body's own connective tissue, leading to inflammation in the affecte areas). Lupus is a mysterious disease, affecting far more women than men (at a ratio of 9 to 1), and there's only a genetic component about 10% of the time.
That was twenty years ago, and since then Swanson has become an expert on living with lupus and wants to share some of her knowledge so that others can benefit from what she's gone through. Although she had to abandon her medical and TV careers, she started a successful career as an author (you can learn more at her website) and has seen significant improvement in her lupus symptoms. Here are some of the essential things Swanson thinks people should know about lupus:
- Lupus affects everybody differently. "Lupus does what it wants to do when it wants," says Swanson. "Some people have a flare up and then don't have another symptom for two decades, while others have their first symptom and are dead three weeks later. So a person who has a rash and joint pain has the same illness as somebody who gets kidney disease and seizures."
- For that reason, lupus is tough to diagnose. "I was lucky that I was diagnosed quickly, but for some women have to see ten different doctors before diagnosis," she says. "Three of the most common symptoms are fatigue, fever and hair loss, but those things can all be attributed to other causes." You can learn more about lupus diagnosis at the Lupus Foundation of America website.
- Treatment strategies vary by person, and are evolving every day. "You don't want to take a sledgehammer to a mosquito, you want to tailor the treatment to the organ system involved and not over-treat," says Swanson. "Lupus treatment is both an art and a science, so find a rheumatologist who you like and trust." She also emphasizes that you shouldn't give up hope, because new treatments are being developed every year. "When somebody starts to say 'My mother had lupus and . .' don't listen," she says. "Anything more than ten years ago is ancient history in lupus treatment."
- Keep moving. "You'll be tempted to lie down and wait for the pain to go away, but it's not going to help, and that will just make you more aware of the pain," she says. The non-medical treatment that Swanson has found most helpful is warm water exercise therapy, which is done in a pool heated to 92 degrees. "In the water nothing hurts and you'll feel like you're ten years old again, remembering the joy of swimming," she says. No matter what, get up in the morning, get dressed and make your bed. "Even if that's all you can do all day, that's fine, but don't lie around in your pajamas," she says.
- "Outsource anything you can." When Swanson was at her sickest she would fax her grocery list to the store and paid them to do her shopping and deliver it to her. Getting help with chores allows you to save your energy for the important stuff.
- Finding a way to give back will make you feel better. "When I was stuck at home, I told my neighbors that I'd accept their packages when they weren't home," she says. "I told the Fedex and UPS guy and the mail man, 'When it's hot, come to my place if you ever need to come in and get a cold bottle of water or sit under the ceiling fan.' Even though you're sick you can still be a part of your community, still look for ways to help people."
- If you've recently been diagnosed with lupus, Swanson recommends you read the book Lupus: The Disease with 1000 Faces (which appears to be out of print, but might be worth tracking down). "Even I as a physician was really confused at first about lupus, and this book is pretty sensible," she says.
Despite the ways in which lupus has limited her, Swanson has a sunny, positive outlook. "At 65, I have the skin of somebody decades younger, because I've never been able to go in the sun—there really is an upside to everything!" she says. "Lupus isn't a disease like cancer, which you try to fight with everything you've got, it's more zen than that," she says. "You learn to live within your limitations."