Whether you are newly diagnosed or have been living with lupus for many years, you may find it challenging to communicate about your condition.
Everyone’s experience with lupus is different, including your comfort level in opening up about this part of your life. It is normal to experience a mix of emotions when considering whether, and how much, to share about your condition with loved ones, at school or at work – and even with your health care team.
The many misconceptions about lupus and the invisibility of the disease itself may at times cause you to feel isolated and stigmatized by others. When you do not fit the image of what a “sick person” looks like, those around you may struggle to understand your experience with symptoms like fatigue and physical and emotional pain. You may find it harder to keep social commitments and have difficulty working. At times you may feel like you are always complaining about your symptoms, or that your friends and colleagues perceive you as lazy.
All these experiences are normal for patients with lupus; however, they may discourage you from discussing your condition with others or going out in public. They may even lead you to ignore potentially significant symptoms that should be shared with your health care team. Deciding when and with whom to speak about your lupus is a personal choice. Although it can be daunting to reveal the full extent of your illness, doing so provides a critical connection with your support system and health care team, and will help them work with you to improve your self-esteem and mood.
Begin by asking yourself: What am I most concerned about in talking about my lupus? What can I gain and what might I have to lose in disclosing to others? When you are ready to share about your lupus with others, be kind to yourself. Move at your own pace while being as open as possible. Here are a few tips to consider:
- Take time to process how lupus affects you before deciding what you would like to communicate with others.
- If you are having trouble explaining physical symptoms or information about your condition, invite a loved one to a medical visit, or a lupus support group or educational workshop, which may help them understand more about the condition and how it not only affects the patient, but also their loved ones.
- You are in control of what and how much information about your condition you share with others. Do not feel pressured to say more than you are feel comfortable revealing.
- Educate your health care team about your cultural norms, values and health practices and how they may affect the management of your lupus. Personal health beliefs can affect how you make decisions about everything from discussing symptoms to your medications and treatment plans.
- Trust and open communication with your doctor are an important part of managing lupus. It is equally important to share how you are coping both physically and emotionally.
- Join a responsible lupus community online, by phone, or in person to feel less alone. These communities may impart strategies and experiences that make it easier for you to talk about living with lupus.
- Although not everyone will understand your experiences, connect with people who are open to learning more about your condition and how it affects you.
- Your feelings and experiences are real and valid. It can take a while to feel comfortable enough to talk with others about lupus. Being connected to a mental health professional who is familiar with lupus may also be helpful in getting you the right support and building new coping strategies.
As you begin to talk about your lupus, you will likely find strength in knowing that lupus does not, in fact, define you. Some people find that discussing their illness with those they trust is validating and liberating. They learn that their ability to take control of their story helps them feel less alone and enables their friends, family members, and others to better understand their illness. They may even become an inspiration to others who are living silently with lupus. By sharing their personal lupus experience with the community, they contribute to advocacy, public awareness, and further research into lupus — research that may one day improve not only their lives but the lives of future patients.
For information on this topic and more, visit the HSS Lupus and APS Center of Excellence page.
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.
