Lupus Self-Management and Communication Strategies
What is self-management?
Self-management is the continuous engagement in your illness, by actively participating in the understanding of the illness, the adherence to treatment plans, and the honest communication of symptoms to your healthcare team.
In an article in Healio, Linda Grinnell-Merrick, MS, NP-BC, the lead nurse practitioner in the division of allergy, immunology and rheumatology at the University of Rochester Medical Center described it thusly: “Self-management in lupus is a combination of information, guidance and encouragement.” She went on to explain that self-management of lupus is a team effort. Healthcare professionals and educators have to reach out to people with lupus, provide resources, and work together to figure out the best outcome.
However, this is easier said than done. Professionals are hard-working, stressed, and sleep deprived, and each person with lupus is unique. This means both unique strengths – but also unique challenges that make self-management difficult. Some of these challenges could even be considered outright barriers!
Barriers to Self-Management of Lupus
Lupus self-management is by no means a simple task! A person’s financial, family, housing, and work situation can all interfere with their lupus and self-management. For example:
- The home environment may be stressful, chaotic, or physically difficult to navigate (such as staircases). It may be very difficult to prevent flares, or potentially, to make it out the door to a doctor’s appointment.
- The work environment may be stressful or dangerous. Even when someone is physically and mentally capable of doing their job. They may be exposed to stressful situations or even hazardous chemicals that might increase their risks of flare. Quitting is rarely an option – or desired.
- The neighborhood that a person lives in may not be safe or conducive to walking or exercise.
- A person with lupus might not have the money to afford appropriate care, even with insurance… or, they might not be able to afford to lose time from work. They may need to decide between doctors’ visits, medicine, rent, food, or utilities for the month – and this can get even more complicated when children or family is involved.
- There may be a genetic component to lupus that makes families more susceptible to the disease or to other autoimmune diseases. If multiple other members of the family have a chronic illness, figuring out who has the time and energy to assist with certain medical-related tasks.
Sometimes, the medication itself can be a barrier. For example, commonly used corticosteroids cause their own serious and debilitating side effects.
Other, more subtle barriers include:
- Less, or no, access to physical or mental health professionals who believe or respect the patient.
- Less convenient or easy access to the appropriate specialized professionals.
- Not having access – or being allergic or sensitive – to fresh and healthy food.
- Being treated poorly overall based on race, gender, or disability status.
How Doctors Can Help?
Health professionals can help people with lupus self-manage through support and education. In fact, about 25% of a physician’s office time is spent educating.
They need to have resources handy or ready to link, and be ready to answer questions and educate people. They need to be able to be aware of the person’s situation and body reactions, and be able to tailor treatment accordingly. The keys to doing this effectively are keeping up to date on research and advances, and communicating effectively with patients and other professionals.
Primarily, health professionals help communicate:
- the symptoms of a flare, and potential flare triggers.
- the side effects of medications and possible interactions with other treatments.
- the components of a healthy lifestyle including:
- limiting smoking and alcohol consumption.
- Family planning and pregnancy resources, an often-neglected aspect of lifestyle treatment.
- What each professional on their team can do, and what they are knowledgeable about.
A great way to do this is to utilize social media. It allows them to communicate in real time and link high-quality resources. Embracing social media can be a great way for professionals and lupus patients to connect (though, they should always be careful, read more about social media and lupus here!)
Professionals also help by believing people with lupus and taking them seriously. Modern medicine is about treating people with respect – a patient advocate can help with this, though you can also be your own advocate with preparation. You can read more about it, here.
A Lupus Warrior’s Takeaway
A big part of self-management is belief in yourself – it’s a self-fulfilling prophesy! Thus, when you are confident in your ability to take care of yourself, it actually does get easier. This is called “Self-efficacy theory,” and it has been researched. So, find ways to make yourself confident. Create plans, get the education that you need, ask questions and advocate for yourself… and don’t let other people drag you down. When you set yourself up to succeed, a lot of barriers go down.
According to a survey by the Lupus Foundation of America, 57% of respondents felt unsatisfied with their health professionals. They did not provide enough information to their patients. Overall, people find health professionals not as accessible and harder to communicate with.
There are three ways to handle this:
- Encourage healthcare professionals to reach out and communicate better (and give them less stressful schedules.)
- Provide a link to health educators, so that the patient can get focused attention and the relevant resources.
- Empower patients to be able to find some of these resources on their own.
As a person with lupus, take advantage of the resources that are available to you. Read things thoroughly, and see if you can find videos and classes on the disease. Studies on the self-help resources revealed that self-help resources were tied to improvements in both physical and mental health.
So, where do you find the resources you need to do this? Well, right here is a good start!
Resources for Lupus Warriors
LupusCorner has many informative articles for people with lupus, caregivers, professionals, and the general public. You can check out our full article list here.
Support groups and networking with other people with lupus can be a big help, too – our app has forums and questionnaires that may be valuable to you. Find it here.
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