Tips from a rheumatologist for your journey with lupus

As a practicing rheumatologist, I have found that most people with lupus learn, over time, how to cope with the disease.

Family support helps a tremendous amount. A good doctor-patient relationship is also important. Friends can help with coping, as well.

There is often a period of sadness and grief when a person is sick, or immediately after an illness or diagnosis, but people with lupus gradually come to grips with that.

Other tips that may be helpful for your journey with lupus: 

• Focus on the future and what you need to do to get better. 
• Don’t look back at what might have caused your illness or ask, “Why me?” 
• Try to incorporate some level of exercise into your daily schedule.
• Educate yourself about lupus and get involved in your own health care.

Stick to reliable sources of information on lupus. When it comes to reading about lupus in the library or on the Internet, be sure you are accessing reliable content. Read up-to-date books and visit trustworthy websites, such as this one, or the National Institutes of Health. Be cautious when reading blogs that relate personal stories, but not necessarily accurate medical information. 

Embrace complementary strategies for managing pain. When coping with pain, visual imagery can be helpful; think of yourself watching the ocean or walking over a new layer of snow and try to relax your body. Distraction can help. Read, watch TV or a movie, pursue a hobby—anything that keeps your mind off your symptoms. Look for treatments, not cures.

Make the most of your medical appointments. When you have an appointment, write down what you want to discuss with your health care provider and prioritize it before you go so the most important issues are covered. Consider bringing someone along who can listen so that both of you have a good chance of understanding treatment suggestions. Don’t hesitate to ask questions if you don’t understand the advice. And don’t be afraid to call your physician if you have concerns, new symptoms, or any other problem.

Read: 6 keys to preparing for a medical appointment

If your symptoms worsen, talk to or visit your health care provider before changing your diet, medications, or over-the-counter supplements. 

Try to talk about your illness. This is much better than internalizing your angst and worries. A psychologist or other professional counselor can help you talk about the effect the illness has on your career, family, and hopes and dreams.

Above all, realize you will get through this. With the support of your family and health professionals you are comfortable with, and your own commitment to the treatments prescribed, you can regain your life.