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Living Well with Lupus

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May was Lupus Awareness Month, and celebrations in spreading awareness swept the nation! Individuals impacted by lupus came together in various towns across the nation wearing the color purple to show support and celebrating life. City buildings to fountains all lit up purple with pride! Many people are not aware of what lupus is, however. They also may not know how to recognize or support those with lupus.

Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disorder which has a complex array of multiorgan manifestations. SLE is mostly diagnosed in women of childbearing years; however, there is a small percentage of men who are also diagnosed with lupus. Lupus impacts various ethnic groups, including African-Americans, Hispanics, Asians, Polynesians, and Caucasians.

Symptoms can include a butterfly rash around the cheeks and nose, skin rash (discoid lupus), fatigue, joint pain and stiffness, headaches, hair loss, and a low grade fever. It can also affect various organs (kidneys, heart, and lungs, for example), as well as trigger neuropsychiatric symptoms, such as depression, anxiety, psychosis, and cognitive decline. The cause for lupus remains unknown, however research indicates a genetic, hormonal, and environmental component.

Learning to Help Yourself
Due to its complex nature, lupus can be difficult to diagnose, however the time to get diagnosed seems to be decreasing significantly thanks to research and awareness. Medical treatments for lupus can include chronic steroid treatments, chemotherapy, or the use of other anti-malarial and anti-inflammatory medications. Treatments usually work on managing the symptoms of lupus, not curing it. Lupus is an “invisible” illness.

Many individuals living with lupus do not “look” sick. Lupus is deceiving in many ways and can cause significant psychosocial stress and issues with cultural stigma. Living with a chronic illness, such as lupus, has a very exhausting affect on the physical, emotional, behavioral, and cognitive areas of the individual. Although stress seems to be a culprit in exacerbating the symptoms of lupus, there is hope in living well with this diagnosis.

Coping with stress is an essential factor in managing lupus. In theory, effective stress management may reduce the exacerbation of lupus and improve emotional well being. There are many holistic ways in which people with lupus can help reduce their stress and improve disease management. These may include relaxation techniques, aromatherapy, dietary changes, guided imagery, behavioral changes, low-impact exercise, building a health support system, and mental health counseling support.

Helping Your Loved Ones
Having had lupus for over 26 years and considering my recent lupus research, I realized the need to develop a holistic and integrated model of care for lupus management. This is the foundation of my support groups in Orlando, Florida, which are Living Well with Lupus and SALAAM (South Asian Lupus Awareness and Mentoring), an online coaching and mentoring site for those with lupus.

The focus for these support groups and mentoring service is to provide a positive nurturing environment where individuals and families affected by lupus can find professional psycho-social help in person or online. Often, newly diagnosed patients are limited in their knowledge on the various manifestations of lupus and questions they should be asking their physicians. Individuals, significant others, family members, and friends dealing with lupus for years may feel exhausted with the condition and its many symptoms and can find a comforting environment where they know they are not alone.

Being a caregiver for someone with a chronic illness is also very stressful in many ways and a support group can be the key to speaking with, sharing stories with, and learning how to best care for your loved one with lupus. Issues related to relationships, sexual intimacy, lifestyle adjustments, body image, and physical and psychological distress are just some of the topics which may be part of healthy discussion on coping with lupus. It can also help break stigmas and cultural barriers on health behaviors within various ethnic cultures.

Get Resources and Speak Up!
Helping you take an active role in your own physical and psychological health care is the goal of these support groups. The more we discuss and acknowledge the struggles with lupus, the better equipped we can be in learning and applying healthy coping skills. Keeping a healthy mind, body, and spirit will help you Live Well with Lupus!

Check out holisticmentalwellness.com for information on Living Well With Lupus or salaamusa.org for information on South Asian Lupus Awareness and Mentoring.

What are some ways you cope with lupus? Are there any stigmas (social or cultural) you have dealt with related to the lupus, and how have you coped with them? What lifestyle changes have you made in managing your lupus?

Let’s start a conversation and continue to spread awareness!

© Copyright 2013 by Abeela Haq, MA, LMHC, therapist in Orlando, FL. All Rights Reserved.

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Comments
  • Ted May 30th, 2013 at 10:16 PM #1

    to be frank I didn’t know much about lupus except that it is a skin related problem.but I can imagine the effects it has on an affected person on a psychological level.it takes energy and courage to live with something like that.and ignorance of the issue onl makes it worse I guess

    spreading awareness is a good initiative and one that we should all participate in.go on people,we’ve got your back.you can be strong and handle this problem!

  • ellis t May 31st, 2013 at 3:51 AM #2

    Thanks so much for this article.

    Lupus is so prevalent especially among women and yet you rarely hear anything about it or how to help those who are suffering. I hope that this helps to shed new light on the issue.

  • Abeela May 31st, 2013 at 7:15 PM #3

    Thank you Ted and Ellis for your wonderful comments and support! I will be working on future articles on lupus, stress, and coping! Lupus is a very difficult condition to manage, but it is not impossible! One can live a very healthy and good quality of life! I hope we can all work together to help spread awareness!

    Cheers!
    Abeela

  • H.O June 1st, 2013 at 12:08 AM #4

    Its easy to get support when your illness is ‘visible’, that is why most of the focus is on physical health problems. As soon as the problem is ‘invisible’, not many people know or care. Been affected by depression for years now and when people see I have a problem many just think I’m lying because nothing is ‘visible’. sad but true state of the awareness in the general populace. Hopefully these kind of awareness programs and events will make things better.

  • Monica June 1st, 2013 at 12:53 PM #5

    There is no reason why this has to be a disease that is no longer understood. I think that a lot of MDs in this area are making great steps with lupus patients and that this in turn is helping those with lupus better understand their disease, their triggers, and the things that they can do to ward off some of the unplesantness.
    Just like with anything else it takes awareness and it takes education, on the part of doctors as a well as patients and families. More and more I see this happening for so many diseases, and I think that the more we are able to take control of our bodies and make them work for us and not against us then the more this allows us to control our own destiny.

  • Kinley June 3rd, 2013 at 3:51 AM #6

    Lupus is one of those diseases that I think that many of us have heard of but that most of us still don’t really understand what it is or how it can effect the patient. I think that the one thing that we have to be careful about is that since there is no one picture of what this disease looks like then many of us will then just dismiss it. But if it we are able to give it a name and a face then maybe by that we will begin to give patients as voice.

  • Abeela June 11th, 2013 at 6:34 PM #7

    Thank you for sharing your thoughts. I meet individuals each month at my lupus support group who find it so difficult to cope with lupus and express an emptiness in their lives. Monica, I agree with you, there is no reason why lupus should be misunderstood. A collaborate effort in managing lupus with physicians and other healthcare providers is one of the main steps leading towards a positive change. I truly believe that there is a positive shift happening in understanding this condition and the support and awareness available for lupus. It is just a matter of taking back the reign of control in managing your own health!

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