Dealing with a chronic condition like lupus can take an emotional toll when you manage it day in and day out. It’s normal to have emotional changes with lupus, and many people dealing with chronic illness will go through clinical depression.
People living with lupus are six times more likely to have depression and anxiety. It can be challenging to deal with lupus-related issues which raise your risk for mental distress, including:
- Managing lupus symptoms
- Treating lupus flare-ups
- Dealing with medicationside effects
But some of the reasons don’t have to do with lupus at all and involve things like your workplace, social life, or your family support system and community.
When you’re dealing with these personal issues on top of managing lupus, it can be hard to deal with negative or sad feelings.
Getting treatment for your mental health is an important part of lupus care — this is especially true for people of color. One study found that Black people who have lupus are 2 ½ times more likely to experience moderate to high levels of anxiety.
Finding culturally competent mental health care providers is crucial. You may feel more comfortable talking to a therapist or doctor with similar values and beliefs who understands how the unique mental stressors in your life affect your lupus symptoms.
Here are ways to find culturally sensitive doctors and therapists to support your emotional and mental health as you live with lupus.
What Are the Signs of Mental Health Distress?
Sometimes it’s hard to know when you’re dealing with emotional distress, especially if you’re mainly focused on the physical demands of lupus. But you’re not alone. About 25% of people with lupus have depression and 37% have anxiety.
Being aware of what depression and anxiety feel like in your body is the first step to getting better. Symptoms of depression and anxiety can sometimes feel similar.
Talking with your doctor can help you figure out if you’re experiencing some of the common signs of anxiety, including:
- Worrying without being able to stop
- Feeling uneasy, tight, or tense
- Racing heartbeat or fluttering in the chest
- Breathing too quickly or too fast (hyperventilating)
- Feeling shaky
- Feeling like something bad will happen
- Sweating or feeling cold
Depression can change the way you physically and mentally feel. Some common signs of depression include:
- Feeling out of control or hopeless
- Crying for no reason or feeling sad
- Getting too much or not enough sleep
- Eating too much or too little, leading to weight changes
- Low energy
- Forgetting things or having trouble concentrating
- Difficulty making decisions
- Losing interest in activities, feeling numb or “flat”
- Thoughts of harming yourself or suicide
If you or someone you know is thinking of harming themselves, find help by dialing 988 to reach the Suicide & Crisis Lifeline (formerly the National Suicide Prevention Lifeline). The line is always open so you can speak to a trained counselor at any time.
The good news is that with treatment, your depression and anxiety symptoms can get better and greatly improve your quality of life.
Getting the best care is also tied to cultural competence — your therapist’s or doctor’s ability to mentally meet you "where you are" and relate to your community, background, and beliefs.
Why Cultural Competence Matters
Your culture includes your beliefs, habits, and values. It can also include the way you think, act, and talk. This belief system is core to who you are, and when it comes to mental health, your culture deeply affects your approach to healing.
You may describe your lupus and mental health very differently compared to someone else with a different belief system, for example. Or your culture may include medical mistrust because of a history of mistreatment by the medical community.
Language matters, too — finding someone who understands you well is key.
When you see a therapist or doctor who is culturally competent, they can better help you because they understand your beliefs and community connections.
It’s OK to advocate for yourself as you find a mental health provider. In fact, it’s vital. The more barriers you remove between you and your doctor, the better your healing and recovery can be.
How Do I Find a Provider Who Fits My Needs?
It’s common to feel overwhelmed or even frustrated when finding a mental health provider that fits, especially if you’re managing anxiety and depression. These helpful tips can get you started.
Finding a doctor or therapist who is sensitive to your specific culture and life challenges is key. Try to break the search down into smaller steps.
You can also search or post anonymously in support groups or online if you don’t want to identify yourself. Try Black Mental Health Professionals, the National Association of Black Counselors, or Clinicians of Color to start.
Once you identify a few providers to contact, consider these points:
- To help you feel comfortable when choosing your therapist or doctor, do you want someone with a similar race?
- Do you want a therapist with the same gender, spoken language, or something else?
- Would you rather have in-person or online sessions?
- Are you looking for one-on-one sessions or group therapy?
- What kind of therapy are you interested in?
This may take some research or trial and error. For example, therapy that focuses on the relationship between your behavior and thoughts is cognitive behavioral therapy (CBT). Ask what kinds of therapy your therapist or doctor offers.
When you meet with someone for the first time or do an intake session, be up-front and honest about what’s important to you and what your goals are. You can ask:
- How familiar are you with my beliefs, values, and attitudes toward mental health?
- Do you have experience treating people with my belief system or from my cultural background?
- Have you had cultural competence training?
- Are you or members of your staff bilingual?
- How would you include aspects of my cultural identity, such as age, faith, gender identity, or sexual orientation, in my care?
- Do you have experience working with people who have chronic illness?
Their answers will give you a better understanding of the kind of care they can offer you.
What if Cost Is a Barrier?
If you see an in-network doctor or therapist, you may have a limited budget for visit co-pays or you may not have health insurance.
You can ask your therapist or doctor about sliding scale fees based on income. You may also look into low-fee or free community mental health clinics.
The National Alliance on Mental Illness (NAMI) HelpLine 800-950-NAMI (6264) can help you find a clinic in your area as well as a helpline for crisis needs. The National Association of Free and Charitable Clinics provides a list of free clinics and pharmacies in the United States and includes mental health services.
If you’re a student or a veteran, you may be able to find mental health help through a university clinic or VA medical center at low or no cost. Even if you aren’t a student, a nearby university or a training hospital may provide help at a low cost.
Mental health doctors (psychologists and psychiatrists) must get service hours during their training (internships and residencies). You may be able to find someone offering a lower-cost session during their training that is supervised by another licensed therapist or doctor.
Show Sources
Photo Credit: martin-dm/Getty Images
SOURCES:
Lupus Foundation of America: “Managing Your Mental Health With Lupus,” “Mental Health Resources.”
Medicine (Baltimore): “Depression and anxiety in systemic lupus erythematosus: the crosstalk between immunological, clinical, and psychosocial factors.”
Lupus Research Alliance: “5 Facts About Lupus & Mental Health.”
National Alliance on Mental Illness: “How to Find a Culturally Competent Therapist,” “Finding Mental Health Care That Fits Your Cultural Background.”
Anxiety and Depression Association of America: “BIPOC Communities: Questions to Ask When Selecting a Therapist.”
ACR Open Rheumatology: “Anxiety symptoms among patients with systemic lupus erythematosus persist over time and are independent of SLE disease activity.”
