Being diagnosed with lupus can bring about a flurry of emotions. You may feel upset or nervous about what the new diagnosis means for your future. You may be angry at the idea that your life may change. You may even feel happy that after some time of not feeling well, you finally have a name for what was ailing you. Finally, your condition has a name. Each of these emotions is normal, and no reaction is the right one. In fact, you may feel all of these emotions at some time or another.
But beyond your emotional reactions, you may be wondering what your next steps should be. Below are some tips for moving forward after being diagnosed with lupus.
1. Get a second opinion. Before you begin your journey into chronic health care, you want to make sure you are heading down the right path.
2. Bring a friend or family member to be an advocate for you. You may need to have some tests done and see many doctors in the beginning. Having someone else there to take notes, ask questions, or just be an emotional support is very important. It is normal to forget a question, or not remember important information after a doctor visit. It is also great to have a supportive person with you who can hold your hand, distract you, make you laugh, or just listen.
3. Start a notebook or a folder for your healthcare. Take notes and ask for copies of your test results. Take time to actually read your tests and learn what they mean, or ask your doctors. Keeping a record now is a great start. It's always a much bigger job to back track and get records that you may need in the future. These records and notes can be helpful when you're seeing multiple doctors, dealing with insurance companies, applying for disability, etc.
4. Do your research. After being diagnosed with lupus, you will soon hear all kinds of words that you may not have heard before. Names of medications, secondary diagnoses, and symptoms can be overwhelming and scary. A great way to combat this feeling is to learn as much about lupus as you can and get yourself familiar with the lingo. This will help empower you in conversations with doctors and nurses. When you know what they are talking about you can ask appropriate and necessary questions. WebMD is a great place to start on your quest to educate yourself. There are many articles, posts, and videos on the site that are very informative.
5. Ask questions!!! Do not be afraid to ask questions, even questions you deem silly or unimportant. If you feel any kind of change in your symptoms, tell your doctor. I cannot stress this enough. You are a partner with your doctor in your healthcare. You need to take an active role. You are the only person who knows your body best, so if something feels off, say so.
What would you tell someone who was recently diagnosed with lupus? What would be your top tips?