Wake up. (Did you have a sleepless night for whatever reason?)
Get ready for work. (Are you currently employed?)
Get kids ready for school. (Are you the only present caretaker for them?)
Eat breakfast. (Do you have healthy options that don’t aggravate your condition?)
Start your commute. (Is it a long commute? Do you have reliable transportation?)
Go throughout your workday. (Is work a safe environment?)
Stop at the grocery store to get dinner on the way home. (Do you have the means to buy what you need?)
Cook and eat dinner. (Do you have the time to cook and eat?)
Watch a show or movie. (Can you access programming/streaming sites on your budget?)
Get ready for bed. (Do you need to take any medications?)
Each step in this fictional day can have variables that change the dynamic for a person’s everyday life. If you have lupus, the number of variables and unknowns only grows. When you’re Black, Hispanic, Asian, or Indigenous, those stressors can magnify even more.
July is BIPOC (Black, Indigenous, People Of Color) Mental Health Awareness Month. Lupus management can involve managing neuropsychiatric lupus symptoms1 like headaches, anxiety, feelings of depression, and “brain fog”. That is an uphill battle on a steeper incline when you’re low on spoons2 because so many aspects of your environment affect your condition. These are called SDoH (social determinants of health).
SDoH is a term to describe how and where you grew up or live, how and where you work, and how your overall environment affects your life. BIPOC lupus warriors face morechallenges in areas like income, education, healthcare access, discrimination, and education. It shouldn’t be surprising that this can lead to increases in disease activity, organ affect, and mental health decline.
- Pain, fatigue, and other lupus symptoms can greatly decrease the amount of time you can spend at work, with family and friends, and time spent in hobbies you enjoy.
That, in turn, starts and keeps the anxiety/depression snowball rolling; it’s difficult to do things that might balance your mental health if you can’t actually do them. - If you need to go see a doctor about your symptoms, you might have more fragmented care (going to multiple places) if you don’t have private insurance. You’re also at higher risk for hospitalization and readmission.
- How can you manage feelings of depression if you can’t get an appointment with a physician who can treat you?
How can you get an accurate diagnosis if your physician only sees negative stigmas and stereotypes based on your race/ethnicity/nationality? Does your physician speak the same language or is there a communication barrier? - Lacking higher education means lowered work opportunities or loss, lower income, not taking medication as prescribed, and increased disease activity and work disability.
- If there are no social supports in your neighborhood or in places you can get to reliably, how can you find commonality with your peers who might experience similar situations?
Lupus warriors are warriors because they’re resilient in the face of a disease that wreaks havoc and can upend their lives completely. However, a marginalized group overcoming terrible circumstances in the past as a whole doesn’t mean that an individual has to become a superhero to live their daily lives.
“Because these communities have had to historically overcome adversities such as slavery or colonization, it is often expected that one should address issues such as anxiety and depression with resilience and perseverance. Even though there have been continued strides to destigmatize mental health, there is still a lot of work to be done within the BIPOC communities.”
–Susan K. Gurley, Executive Director, ADAA3
Mental health equity means that everyone can reach their full health potential without any thought to their background, and without any inhibiting factors or conditions.
What CAN you do?
If you have lupus…
- Talk to a therapist. There is no embarrassment or shame in talking to a trained mental health professional. Not only can they help you navigate the reality of living with a chronic disease, they can help you with the other parts of your life that are impacted by it.
If you are able to see a psychiatrist, they might also recommend medications to help manage anxiety and/or depression. - Count your spoons. Being realistic about your limits for the day can help you prioritize where your physical and mental health focus needs to be. Try to plan your day as best as you can to give the proper amount of mental bandwidth to something or someone.
- Examine your sleep/exercise regimens. If you’re able to be physically active, take a walk in a safe area with a friend or family member. Low-impact exercise routines like yoga can help reduce pain. Talk yo your physician if you can about what you can do safely without causing a flare.
- Find your people. Join a support group. You can also start one if you think there’s a need for one in your area, or one to address a specific facet of living with lupus you think isn’t talked about enough.
We’re working on our physician referral directory and our Texas resource directory to make sure we can point you in the right direction if you need access to any of these things!
If you need immediate mental health support, 988 Lifeline is here. There are also more immediate resources covering a wide range of needs as well.
If you want to change this narrative…
We at Lupus Texas fight to recognize and remove the disparities and inequities that can make managing one’s lupus a bigger fight than they can manage on their own. We aim to shorten the time to diagnosis through proper healthcare worker education.
- When the physician knows better, the patient can know better. Healthcare professionals need to know how to diagnose, treat, and manage the diseases their patients live with every day. Contact us if you’d like to partner on a healthcare worker training opportunity or a speaking engagement on lupus health education.
- Physicians, ensure that you’re treating your patients with cultural competence. It is essential to have healthcare providers who can be empathetic and culturally aware of their patients’ backgrounds. Improved understanding, regardless of languages spoken, can improve treatment and care as people feel comfortable opening up to their doctor without judgment.
Lupus is no respecter of persons, and neither are we. We advocate for our warriors to get access to high-quality healthcare, regardless of their ability to pay. We want them to have a better quality of life despite being diagnosed with a chronic disease.
- Support our PATH (Patient Access To Healthcare) Grant program, and consider making it a recurring donation so that lupus warriors can get the treatment & medication support they desperately need.
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