A Physician’s Journey With Lupus: Lessons I’ve Learned
As an internal medicine doctor who was diagnosed with lupus in medical school and endured multiple organ complications for over 36 years, I’d like to share lessons learned over the decades. These stem from my reading, hard-earned experience, and recommendations from my physicians. First, I want to encourage all of you that a good quality of life IS possible with lupus, and these are suggestions that have helped me to enjoy life despite the challenges.
Listen carefully to your body and rest when needed. We require more sleep and naps than a healthy person, and fatigue triggers flares. In our achievement-oriented society, we all tend to push our bodies beyond our ability. It’s especially tempting to do so when your lupus is fairly stable. Remember how terribly unpredictable lupus can be, as I found after a 20-year period of mild disease when I developed a life-threatening flare, due to working excessively long hours. Try to choose a career that offers you flexibility, perhaps the ability to work from home, and an opportunity for self-care.
I’ve learned the hard way that warning signs and pattern of flares can change over time, so don’t be fooled into complacency. Lupus, meaning wolf in Latin, is very devious and fools physicians and patients alike! Severe fatigue can be the ONLY symptom of a very serious flare, so see your doctor if your condition changes.
ALWAYS PRIORITIZE YOUR HEALTH!!!
We are replaceable at work but often cannot undo the detrimental effects of flares, so be open to modifying your work hours and even career to preserve your health. Don’t be afraid of change, often needed when living with lupus. There may be periods during which you are unable to work without compromising your health. Don’t allow pride to prevent you from taking a medical leave—something a good lupus doctor will support. Stay positive and remember that even overwhelming, severe flares are survivable, and a return to a good quality of life is often achievable.
Eat an anti-inflammatory diet. There is evidence that casein, a protein in dairy, is particularly inflammatory. Some leading rheumatologists believe that a plant-based diet is the most anti-inflammatory diet. Research this carefully to make sure you get your nutrients, discuss it with your doctor, and take a vitamin B12 supplement if you decide to try this. Some with lupus find it extremely effective, as well as being the best diet to reduce heart disease risk, a major cause of death in those with kidney disease and those over age 50 with lupus. Avoid garlic, alfalfa sprouts, and papaya, as they tend to stimulate the immune system, and eat organic foods as much as possible, as pesticides can trigger lupus flares. Avoid junk and processed (packaged) foods and excessive sugar.
Also, avoid echinacea and melatonin, which may trigger flares. There is good evidence that being deficient in vitamin D triggers autoimmune disease and maintaining a vitamin D level of at least over 50 ng/mL (some experts prefer over 70 ng/mL) helps prevent flares. There’s some evidence that omega-3 fatty acids, such as found in nuts and flaxseed, may be helpful.
*Always make sure to consult your doctor when looking to start a new diet!
Exercise regularly, aiming for at least a half -hour walk daily, if possible. Resist the urge to lie in bed all day, as exercise is the best proven method of combating fatigue and is far safer than increasing immunosuppressants. Yoga and Tai Chi are also very beneficial, as they strengthen, improve balance preventing falls, and are relaxing and meditative. As we’re at risk for osteoporosis and fractures due to steroids, weight-bearing exercises like walking and Tai Chi are especially helpful. Loren Fishman, M.D., of Columbia University published a study of “Twelve Poses Versus Osteoporosis,” which is available online on YouTube and proven to increase bone density. Maintaining a healthy body weight is also important to overall health.
Pay close attention to your mental health as well, as like physical stress, psychological stress triggers the disease also. Meditation, prayer, deep breathing, relaxation techniques, pets, and spending time in nature are all helpful. Maintaining a perspective of gratitude and positivity is incredibly helpful, and I find a twice daily brief focus on gratitude upon awakening and going to sleep is invaluable. Counseling can be helpful with depression or other mental issues related to lupus, which are quite common.
Be open with family, friends, and employers about your illness in order to obtain needed support. Avoid toxic relationships or ones in which your partner lacks empathy or willingness to accommodate your needs, as the stress this brings can aggravate your illness. Also, trust your own assessment of how you feel, as we often appear outwardly normal, while feeling unwell.
Diligently protect yourself from UV exposure. Over time, I have found that careful use of sunscreen, UV protectant clothing (over 50 SPF is best), a UV umbrella, and even UV protectant coating applied to car windows make a great difference! Remember that regular clothing provides only a few degrees of protection and that UV light is present even when cloudy and whenever it isn’t completely dark outdoors. UV-blocking clothing is far easier to use than sunscreen, which is rarely used correctly as it requires a thick, visible coat for adequate protection.
Take your medications regularly and see your doctor regularly, as lupus kidney disease often causes no symptoms. Regular blood and urine testing are critical to early detection, helping you to prevent kidney failure. Request appointments if you’re flaring in between visits, and don’t be afraid to seek a second opinion, especially if you are taking immunosuppressant medication or it is being changed in some way. Academic centers often have lupus specialists with the most experience with the disease and uncommon complications, though there are some excellent community-based rheumatologists as well. Take recommended vaccinations, as we are more infection-prone, and keep up with your general health maintenance, prevention AND DENTAL CARE. Avoiding tobacco, alcohol, and drugs is very important.
Though there may be moments when you feel like giving up, these difficult times will usually pass. Life is a precious gift! Though we may lose the ability to do some things we love, by remaining open to possibilities, other passions can be discovered. As we adapt to these challenges, we can reinvent ourselves!
Thank you to our valued guest contributor for sharing their lupus journey, from a physician’s perspective! If you would like to share your personal lupus story, send an email to firstname.lastname@example.org!
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