Q&A

The following interview is with a current Lupus patient who would prefer to remain anonymous but has agreed to talk about their struggles with Lupus and how they have affected her.

Q: How has your day-to-day live changed because of Lupus?                                                                A: I am in almost constant pain. It makes doing little things really difficult. Its hard knowing that this is how its probably going to be for the rest of my life. The treatment I am receiving makes it better but doesn't make the symptoms go away completely. I am in so much pain that some days I can't get out of bed but other days it isn't so bad. Its surprising just how much it can impact your life. 

Q: What has been the hardest part of dealing with Lupus?                                                                    A: Probably the hardest part of adjusting to Lupus has been the day to day changes and the fact that I have to be so much more careful with what I do in order to make sure that I don't do something to make the pain worse or other symptoms more severe. It also kind of sucks that there are some people that treat me differently, mostly like I am too fragile. But it's also been hard to see how it has affected my family and how it sometimes feels like its a burden on them.

Q: How much did you know about Lupus prior to being diagnosed?                                                    A: I honestly did not know much about Lupus before I was diagnosed because I had never really had a reason to research it or find information on it. I mean, I had heard about Lupus before and I knew that it was some sort of disease but I didn't really understand what it actually was or how you could get it or even what the symptoms were. I had no idea that it could be so painful until after I was diagnosed and was experiencing all the symptoms.

Q: How much did you know about Lupus after you were diagnosed?                                                    A: After I was diagnosed, I wanted to learn as much about it as possible. A lot of people told me that it wasn't a good idea because the more I read about it, the more I would be scared of the things that could happen. But I'm really happy that I was informed the way I was. It made me feel like I was more in control and it helped me feel prepared for the worst-case scenario. This may not seem like a good thing but it made me more confident in the treatment I was receiving and helped me be more proactive when asking questions at my doctor appointments. 

Q: Do you have any tips on how to break it to your family that you have Lupus?                                  A: There isn't really a good way to break this kind of news to your family. A good idea might be to just tell your parents or siblings first, and then begin telling others. That way, you feel like you have a support system and its not overwhelming to tell everyone all at once. I would probably say the most important thing is that you need to remember that it is going to be a big deal for them as well so there will probably be a bunch of different reactions. Just make sure that you are prepared for the different types of responses. 

Q: What were the reactions of your friends and family when you told them?                                      A: Everyone was devastated but they were really supportive of what I was going through. Even though they were upset, they were able to put that aside to make sure that I was taken care of and that I knew they were all behind me and cheering me on in my fight. It felt really scary at first to have to tell them but it felt really great to know that I had a lot of people supporting me.

Q: Did part of you blame your family because Lupus has been connected to certain genes?              A: Not at all. It wasn't their fault, especially because I found out that its not just dependent on genes. But strangely it made me feel like it wasn't my fault because it wasn't like anything I had done had caused me to have the disease. It just kind of happened. 

Q: How have your life goals and dreams changed since you were diagnosed?                                    A: I know that I'll still be able to accomplish a lot of the things that I have wanted to. But I also know that it will mean giving things up that I really love, such as dance. Looking back on my life, though, I know that I've accomplished a lot. I have been able to dance to promote awareness of different things and that I was able to work in the field I wanted to. I see all those things as accomplishments and signs that I've had a pretty great life and I can't wait to see what else it has in store. 

Q: How can I get more involved in raising awareness?                                                                            A: There are a lot of ways to get more involved. There are quite a few organizations that are dedicated to promoting awareness of Lupus. You can get in contact with these organizations and help them fundraise, whether its just door-to-door or even helping plan an event where all the proceeds will be donated to Lupus research. Another thing you can do is just make suer that you and your family understand what it is. The more people that know about it, the more informed we will be as a society and the easier it will be to prevent and find the solution for the disease. 

Q: Do you have any advice for someone who has just been diagnosed?                                              A: Stay calm. Don't freak yourself out because there isn't anything you did that caused it but also don't be in denial. The sooner you accept it, the sooner you'll be able to talk about treatments that may work for you. Get as informed as possible so you feel like you are informed and feel comfortable asking questions. Know that you will be on a roller coster with bad days where the pain is so severe you feel like it'll consume you but also with good days where you feel almost normal. Finally, try to build a support base. Whether its family or friends, it'll make you feel like you're not alone, which makes those hard days easier to get through. 

Survey

A survey was conducted in 2011 by GfK Custom Research North America that included patients, those that provide care and support for patients, and medical professionals. The survey was based on a variety of different issues related to Lupus, patient care and their feelings. The survey addressed 4 main areas: 

• Long term: 51% of patients surveyed strongly agreed that they worry about the long-term effects their Lupus could have on them
• Patient-Doctor Relationship: 46% of patients say that they minimize their symptoms when explaining them to a medical professional while 53% of doctors believe that their patients are completely honest and forthcoming about their symptoms and 72% disagree that their patients minimize their symptoms during appointments
• Limitations: 43% of patients feel that they are limited in what they can do because of their Lupus however 24% of patients that describe themselves as being limited report that they still feel optimistic about their treatments. On the other hand, 40% of patients that described themselves as being limited by their Lupus have said they are depressed by not being able to take part in day-to-day activities
• Career / Work: 67% of patients have reported having to reduce the number of hours they work due to their Lupus and its symptoms. Similarly, 63% of patients report retiring earlier than they had originally planned due to their Lupus