Top Tips to Managing Life with Lupus

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Did you know that May is Lupus Awareness Month? It’s a great time to learn more about lupus and new ways to manage this condition. Lupus can impact all parts of a person’s life and learning new strategies or reapplying old ones can better help to manage this condition. Whether you are newly diagnosed or have been living with lupus for years, these tips are meant to support you in your journey to living life healthy with lupus.

1. Learn about How Lupus Affects You:

Knowing your symptoms, treatment plans and medication side effects are part of good lupus management. Being an informed patient will help you feel more in control of your condition. Talk to your doctors, read more about lupus from credible sources and participate in lupus educational forums to get the most current information about lupus and how it impacts you.

2. Communicate with Your Health Care Team:

Understanding medical information, treatment plans and instructions from your healthcare team can sometimes be challenging. Open communication with your doctor is a very important part of managing lupus. Use the Ask Me 3 technique to better understand your specific health concerns and what you need to do:

  1. What is my main problem?
  2. What do I need to do?
  3. Why is it important for me to do this?

You and your doctor are part of a team; trust and open communication will ensure you are communicating effectively when things are going well or may not be working.

3. Know the Importance of Skin Protection:

Lupus can affect any part of the body, including the skin. Talk with your doctor about how lupus may impact your skin and discuss ways to keep your skin healthy such as: minimizing exposure to UVA &  UVB rays, wearing sunscreen daily and limiting outdoor activities when the sun is most intense.

4. Exercise & Diet:

While there is no “lupus diet,” a well-balanced diet is important for your overall health and to manage your lupus symptoms. Talking to your doctor or seeking support from a nutritionist can be useful to help you make informed and healthy food choices.

Sometimes with lupus it’s challenging to be active due to pain or fatigue. Exercise doesn’t need to be strenuous. Low-level exercise can help your energy levels and joint health. Remember to keep moving at the level that you feel most comfortable with.  Before starting any exercise regimen talk with your doctor to ensure that it’s safe for you.

5. Mental Health Support is as Important as Your Physical Health:

Lupus is an unpredictable illness that can cause significant changes in your lifestyle, which may result in feelings of depression and anxiety. Mental health is an important part of coping with lupus that can impact your overall health. Talk to your doctor and social worker regarding any changes in your mood or if you are having trouble coping. Being connected to a mental health professional is essential to getting you the right support and can help you build new coping strategies.

6. Talk to Family & Friends:

Lupus is an invisible illness and often times our family and friends have a difficult time understanding what lupus means for our daily lives. Sharing the basics with our loved ones, such as what it means when you are “flaring,” will help them to understand why some days you may feel sicker than others. This can help family and friends become more aware of how lupus specifically affects you. Often, support from our loved ones can help to make us feel understood and cared for.

7. Find Lupus Support:

You are not alone! There are many support programs and national organizations dedicated to providing support and education to people with lupus. Joining a support group, participating in educational presentations and connecting with others with lupus can help to reduce isolation and build a community of support. Lupus does not define you! You are more than your illness and remaining positive and hopeful is an important part of your journey. Stay involved in the activities that bring you the most joy and happiness.

8. Be Kind to Yourself:

Some days may be harder than others and it’s important to follow your body’s cues. If you need to incorporate more rest in your day, go for it. It’s important to listen to your body. This does not mean you are lazy or aren’t pushing yourself enough. Be kind to yourself. Learning to listen to your body and manage big changes in your lifestyle is not easy.

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Priscilla Toral, LCSW, is the Program Manager for LupusLine® and Charla de Lupus (Lupus Chat) ® programs, national peer based support and education programs for people with lupus and their loved ones. She is responsible for the planning and operational oversight for program initiatives, training and supervision of program staff and volunteers, psychosocial assessment and social work intervention with patients and their families.

The information provided in this blog by HSS and our affiliated physicians is for general informational and educational purposes, and should not be considered medical advice for any individual problem you may have. This information is not a substitute for the professional judgment of a qualified health care provider who is familiar with the unique facts about your condition and medical history. You should always consult your health care provider prior to starting any new treatment, or terminating or changing any ongoing treatment. Every post on this blog is the opinion of the author and may not reflect the official position of HSS. Please contact us if we can be helpful in answering any questions or to arrange for a visit or consult.

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