| | Looking for some information!!!
I'm a graduate student studying rehabilitation and I am doing research on Lupus. I've read many articles and books, but I was hoping that someone would be willing to answer some questions about living with lupus. Getting a personal perspective would be invaluable and greatly apprectiated!! All responses would be confidential. Thanks for the help and all of responses.
Here are some of my questions:
1. What is your understanding of this diagnosis for example, your prognosis, complications, symptoms and how long did it take to diagnose?
2. Why do you think it is so difficult to diagnose, and which type of Lupus do you have?
3. What kind of changes did you have to make in your life regarding work, family, friends and social activities?
4. Take me through a good day? Take me through a bad day? What kind of challenges do you face?
5. Are there doís and doníts you have found in living with Lupus? (diet, vitamins, exercise, medications, fatigue, sleep etc.)
6. Has having Lupus impacted you quality of your life personally? If so, how? Has having Lupus impacted your professional or work life? If so, how?
7. Do you use support systems to help with everyday functioning? If so, who and how helpful?
8. Are there life stressors associated with the disease?
9. Did your family have any reaction with your being diagnosed with Lupus? Please explain.
10. Have you ever felt that you were treated differently being diagnosed with Lupus? Could you explain the events surrounding those feelings.
11. Are your taking any medicine or treatment? If so what? Has it been helpful? Are there any new experimental approaches?
12. Have you been told about your long-term prognosis?
13. Is there any history of Lupus in your family?
14. Do you have any counseling recommendations for future counselors who will be working with people with Lupus?