It is a bit difficult to give too much direct advice to newly diagnosed patients because Lupus can be so different from one person to the next. Here are a few basic tips however that are universal for all Lupus patients.
1. Know that you are not alone! Lupus can make you feel like a "medical wonder" or a "freak" but we can guarantee that there are hundreds if not thousands of people going through the very same thing at the very same time. There are even more people who have gone through it and many will go through it in the future. It is very important to be able to talk about what you are going through with others who really "get it"! To find these people, there are support groups in most cities, you can get involved with your local Lupus charity, or you can find them on the Internet with message boards, blogs, social networking sites, etc.
2. Get as much support as you can! You will need a network of support from family and friends as well as others experiencing the same difficulties. Your family and friends will need to be educated in order to understand even a little bit of what you are going through. This can be especially difficult, many times family and friends just do not understand what it is like for you. With loving intentions they can be insensitive, expect too much of you, and they can push too hard. Family members may think you are lazy, not trying hard enough, just don't want to do things, or just want attention. The best way to combat this is to do your best to inform and educate them and then just understand that they don't know what it is like unless they have dealt with something very similar.
3. Get doctors that you can communicate well with. You will need a primary, a Rheumatologist and depending on what organs are involved, perhaps a neurologist, cardiologist, dermatologist, nephrologists, etc. Your primary care physician can refer you to a Rheumatologist and they will refer you to any other specialist you need. It is important that you are comfortable and confident in your doctors. If you are not, find another one. Ask lots of questions! Keep a list of questions to take to doctor's visits with you. more tips on doctor visits...
4. As a Lupus patient the best thing you can do for yourself is to get educated about Lupus especially, but everything health related. A good place to start is our Lupus Information page. You can also visit other Lupus websites and our Useful Links page for resources. Study everything you can about Lupus, nutrition, pain management, related conditions, and anything related to your body. There may be things you can do such as eating better, exercise, taking care of other conditions, balancing your hormones, etc. that can minimize Lupus symptoms as well as give a clearer picture of what is actually going on with the Lupus. There are so many different symptoms of Lupus that can also be caused by medication side effects or other conditions. If you rule out other causes you can treat the Lupus more effectively.
5. The goal of Lupus treatment right now is to reduce and minimize flares. There are many things that can cause flares. You should try to identify what triggers your flares. Possible triggers include stress, illness, sun exposure, certain foods etc. The best way to help you do this is to keep a journal of your symptoms, what makes them better or worse, rest gotten, medications taken, food and drink consumed, sun exposure, and other possible triggers.
6. Balance activity and rest. This is a VERY difficult thing to do! Exercise and rest are both very important but too much of either can start a cycle of inactivity and eventually de-conditioning or even initiate a flare.
7. Be prepared for bad days. With Lupus, you are guaranteed bad days. Some times bad days turn into bad weeks, bad months and bad years. During these bad times it is important to remember that there will be better times. Sometimes it can seem like they will never end, but they will. It is also important to take advantage of the good times. Appreciate every good day you have, do the things you wish you could do when you are at your worst.
8. Do what you can to raise awareness and support research to find a cure. We all need to speak up and let the world know that over 50 years with no advancement in treatments is not acceptable. You can do this in many, many ways. You can do it with Lupus awareness merchandise, by writing to your legislators, spreading the word to those you come into contact with, voting for politicians who support Lupus issues, participating in Lupus fundraisers and Lupus events, donating time and/or money to Lupus research and much more! Things will not change if we keep quiet.
9. Consider visiting a therapist/Psychiatrist. Depression and psychosis can both be actual symptoms of Lupus but much more commonly just the stresses and difficulties of dealing with chronic illness can cause depression and anxiety which worsen other symptoms. Having someone to talk to and perhaps medications can make a world of difference!
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