For many people, learning there is a name for the nagging, painful and sometimes debilitating symptoms they have been suffering from is a relief. But once a patient learns they have lupus the next question is usually, “Now what?”
We’re here to help you navigate through life with lupus, learn the latest treatments and medical options, and share experiences on achieving a full and productive life.
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Whether you’re newly diagnosed or a long-time lupus patient, there are important things you can do to contribute to your overall wellness. Aside from establishing a good working relationship with your doctor and having a solid understanding of the disease, first and foremost you can maintain a positive attitude. Yes, some days that’s easier to accomplish than others, but a positive outlook and forward-thinking attitude is a huge leap towards managing your wellness.
Your attitude plays a key role in how your body feels because stress, anxiety and negative thoughts impact your overall state of wellness. Choosing a positive attitude and making a commitment to enhance your quality of life will ultimately help you cope with the challenges that can go hand-in-hand with lupus.
Equally important is to understand and accept that until there is a cure, lupus is a part of your life that requires continuous attention. By respecting the illness, establishing realistic lifestyle goals,
You Don’t Look Sick
Lupus patients hear that all the time. Lupus is the “look good, feel bad” disease, so many times, friends, family or colleagues don’t even realize you are not feeling well. That means making lifestyle adjustments and altering your daily and weekly routines and commitments is in order. And, it could mean speaking up and asking for assistance in accomplishing tasks that might normally be easy for you to handle.
Consider short cuts in your daily activities. Plan “must do” chores and activities before you over do it with less-than-necessary energy-zapping tasks. Obtain household or child-care help if possible. And, learn to prioritize commitments so you are able to enjoy your most meaningful ones. Proactively making these types of adjustments will help ensure you are not pushing yourself too hard today only to pay the price with increased fatigue later.
Lupus patients need to take an active role in their wellness and work a little harder to stay healthy.
One approach is to keep a diary or journal of how you feel and what the circumstances are when you have a good or not so good day. Paying close attention to your body and documenting the signals it sends is an important way to learn what triggers your flare ups, which medications work best, and how you are coping with the stress of having a chronic disease.
Journaling also helps you track your symptoms so you can have meaningful and detailed conversations with your doctor. Reviewing your notes and organizing your thoughts and symptoms before medical appointments will help maximize your appointment time and allow you to ask questions that can lead to the best possible treatment options for your specific needs.