Q&A: Body image concerns in lupus leave patients feeling ‘betrayed,’ ‘out of control’
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Although commonly referred to as an “invisible illness,” lupus — and some of its treatments — can manifest in ways that are not only visible, but also heavily impact the daily lives of patients.
These effects can trigger body image issues, anxiety and depression in those with the disease.
In recognition of Lupus Awareness Month, Healio spoke with Priscilla Calvache, LCSW, the assistant director for lupus programs and community engagement at the Hospital for Special Surgery, in New York, about the impact lupus has on these patients and how rheumatologists can better aid patients with concerns over body image and disease impact.
Healio: Is it common for patients with lupus to have body image concerns?
Calvache: Although lupus is characterized as an invisible disease, it is very common for patients to experience many physical manifestations of lupus, such as facial scarring, rashes, hair loss, weight gain and other symptoms. At any age, changes in one’s appearance may impact a person’s self-image, self-esteem and increase feelings of depression and anxiety. Additionally, cultural norms and gender roles can foster isolation and bring a sense of shame and guilt for patients. For example, patients have shared, “In my culture a woman’s hair is her beauty,” and, “I’m a man, I’m supposed to play sports.”
Healio: What is the primary concern that patients with lupus express to you?
Calvache: It is hard to narrow it down to one. However, among the top concerns I hear from patients newly diagnosed is the challenges associated with delayed diagnosis, being passed on from specialist to specialist and being told, “It’s in their head.”
I would say that, across the board for all patients, one of their top concerns is managing the unpredictability of lupus, such as many of the changes to their physical health. Many patients feel a sense of loss and often grieve their past identity. Patients have often shared that they feel like their body has betrayed them, leaving them feeling “out of control.” This may lead to patients delaying sharing significant symptoms with their health care providers and often struggling to explain their condition to family or loved ones.
Healio: How do you alleviate these concerns?
Calvache: When working with patients who may be experiencing challenges with their body image due to lupus, it’s important to create an open and safe space for them to share their main concerns. Patients are not often asked about their feelings or challenges in a medical encounter, due to time or other competing concerns. Spending even a few minutes asking patients how their chronic illness or medication plan may be affecting their day-to-day social activities can go a long way. Dating, relationships and sexual health is so critical in supporting the whole patient.
When patients feel concerned or embarrassed about their physical appearance it can lead to treatment and appointment noncompliance, social isolation and job interruption due to the fear of being judged. These factors can impact a patient’s mental health and exacerbate feelings of depression and anxiety. When communicating with patients, I often use shared decision-making techniques in an attempt to neutralize the power imbalance, create an open and non-judgmental safe space where, through open-ended questions, we can explore the patient’s concerns.
It’s also important to validate and normalize patients’ experiences coping with lupus. Lupus is an invisible illness and often family and friends may have a difficult time understanding what lupus means for their daily lives.
Healio: During Lupus Awareness Month, what is something that you have seen that you would like to highlight for rheumatologists and patients with lupus?
Calvache: Research shows that the lack of optimal doctor-patient communication can contribute to miscommunication or lack of trust. Further negatively confounding issues often at play in the doctor-patient relationship include language barriers, cultural beliefs and values, and implicit bias. Feedback from this year’s Lupus Awareness Month programs continued to highlight trust and open communication with your doctor as an important part of managing lupus effectively.
I have encouraged patients to share how they are coping both physically and emotionally, to educate their health care team about cultural norms, values and health practices, and how they may affect the management of their lupus. Personal health beliefs can affect how you make decisions about everything from discussing symptoms to your medications and treatment plans. For physicians, it’s important to ensure we are working towards shared decision-making and partnering with patients to ensure their values and preferences are at the forefront of the decisions being made around patient care.
Healio: Do you have any advice for rheumatologists on counseling frustrated patients with lupus?
Calvache: I would say that it is important to not underestimate the significance a particular set of symptoms or side effects, especially the physical ones, may have on a patient. Often patients experience frustration or insecurity when they feel unheard, afraid and discouraged by challenges managing their condition. I would say it’s important to see each patient as an individual and avoid grouping them with others.
Rheumatologists are often seeing many patients with similar symptoms, but each person’s experience is unique and ensuring that patients feel like their specific concerns are being heard, and not minimized or contributed to the masses, is important. I would also remind rheumatologists to refer and reach out to their social work colleagues. We are a team! Social workers are available to support with optimizing doctor-patient communication, processing difficult feelings and emotions, and linking patients to important community support and resources that may help to support the whole patient.
Healio: What is the best time, in the course of disease diagnosis and progression, to have an initial conversation with patients who may be vulnerable to these concerns?
Calvache: It is never too early to bring up these conversations with your patients. I want physicians to remember that they are the drivers of these important conversations. For example, being aware of important areas to assess in the medical visit and preparing good assessment questions about mental health and sexual health can go a long way in beginning these important conversations with patients. Conversations regarding body image and lupus can help to open the lines of communication and identify patients who may need additional support or resources along the way.
Patients want their health care providers to spend a few extra minutes to discuss their specific concerns, especially if a medication may result in physical side effects. This also allows the physician and patient to have open dialogue very early on, where the patient recognizes that it is safe to raise these concerns during their medical visits. Research has demonstrated the power of the patient-doctor relationship. We know that physician behaviors and attitudes can have a considerable impact on relationship building and developing trust with patients and lead to better overall health outcomes.
Healio: Have you heard from patients who have expressed frustration with the way their rheumatologist handled their body image concerns?
Calvache: In my experience, patients often share frustrations with the treatment options available for lupus and, in some cases, their physician’s hesitancy to consider switching their medication when feasible, despite their concerns. It can be very delicate to manage for both physicians and patients. For example, long-term use of prednisone is associated with weight gain and facial swelling, but is commonly used to treat severe flares or inflammation in lupus patients. The medication may be necessary medically to treat severe lupus symptoms, but in some patients may result in an array of unpleasant physical symptoms.
Patients have expressed they want providers to be proactive about addressing some of the physical manifestations of therapy that can help them be more successful on the treatment plan and better cope with some of the side effects. Patients coping with a chronic illness like lupus are at higher risk for depression. In lupus, depression can occur as a reaction to some of the daily challenges of having lupus and adjusting to living with a chronic illness, or depression can occur as a result of your medication and or treatment plan.
It’s important to align with patients’ concerns related to their body image to identify any individuals at higher risk for mental health concerns, and to support patients overall in identifying what will make them feel and look their best.
Healio: What would you suggest to rheumatologists to ensure patients with these concerns feel seen and heard?
Calvache: When treating some of the physical manifestations of lupus, it’s equally important to discuss the emotional toll it may take on the patient, as well as ensuring patients are educated on all the various treatment options that may be available to help treat physical symptoms like hair loss, skin rashes or lesions.
In a recent webinar conducted by our department in honor of Lupus Awareness Month on lupus and the skin, the top questions asked by participants were about treatments related to physical symptoms as a result of SLE and or discoid lupus. Many patients described feeling in the dark about what their options were. Additionally, in some cases, even when these treatments may not work on their specific symptoms, patients want their physicians to have discussions around what else they can do to manage the emotional impact these symptoms have on their body image.
I would additionally suggest for rheumatologists to work closely with other members of the health care team, social workers and nurses to help educate patients on the availability of wigs or other accessories that may help improve a patient’s self-image and support them in their journey to feeling and looking their best.
Healio: Do you have anything else to add?
Calvache: I want to remind patients who may not be connected to peer support that they are not alone. There are communities of peer support and support groups available that can help to reduce feelings of isolation, inspire hope and help you work through some of physical symptoms of lupus. You are more than your illness and staying connected, especially through the difficult moments and remaining hopeful, is an important part of your journey.
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