The acute and chronic conditions associated with lupus are two sides of the same autoimmune coin.  Each can be devastating, but it is often the chronic nature of lupus that is the most hidden, the most difficult to understand. Read on to find out how both aspects of SLE can affect the lives of those living with lupus – and what can be done to manage them.

• Introduction
• How Acute and Chronic Conditions of Lupus Affect Those Living with Them
• Tools for Dealing with the Chronic Challenges of Lupus
• In Conclusion

Introduction

Lupus is defined as a chronic, autoimmune disease characterized by inflammation that can attack almost any tissue or organ of the body at almost any time.  This rather simple definition hides a more complex reality.  Lupus can simultaneously be both an acute and a chronic condition – each with its own symptoms, diagnoses and treatment options.  These medical challenges are difficult enough, but just as important are the emotional, social and even financial burdens that chronic disease inflicts upon our lives.  It is no wonder that lupus can overwhelm the best of us.  The acute symptoms tend to get the attention, but the chronic consequences can do incredible harm to personal relationships and the futures of those with lupus.

 

First, some definitions:

Acute illnesses tend to develop suddenly (rapid-onset) and generally do not last long – from a day or two to several weeks.

• Examples include injuries, infections or environmental factors that create dramatic, noticeable symptoms.
• They are often relatively easy diagnosed, and require short-term care that usually leads to a predictable recovery or even a “cure.”

Chronic conditions usually develop gradually (slow-onset) and may get worse over time.  They also last longer – three months to many years or a lifetime.

• Examples include conditions like cancer, diabetes and autoimmune diseases – many of which result from genetic or epigenetic causes, and social or lifestyle factors, like unhealthy behaviors such as smoking, lack of exercise or poor nutrition.
• These also often develop gradually over time.
• They are often difficult to diagnose and either require long-term therapies and lifestyle changes.
• These diseases often have no ”cure,” but rather need to be ”managed.”

Lupus is a decidedly chronic disease, however, it also can exhibit acute conditions especially during flares.  This means that lupus presents not only many medical challenges, but also serious emotional, social and financial ones as well.

How Acute and Chronic Conditions of Lupus Affect Those Living with Them

Symptoms and Treatments:

The acute symptoms of a lupus flare include the muscle and joint pain, the skin and mouth sores, rashes, swelling, fever and debilitating fatigue that comes from the focused inflammation of specific tissues.  They also include the acute forms of the “-itis” conditions:  nephritis, pancreatitis, arthritis, vasculitis, myositis and others.  These acute symptoms call for immediate relief usually in the form of strong anti-inflammatories and corticosteroids.  They, hopefully, resolve themselves after a few days or weeks.

Yet, even if acute symptoms are taken care of, the chronic conditions of lupus remain!

Chronic inflammation creates damage that can go without being noticed with subclinical symptoms.  This damage is the hidden aspect of lupus and if not treated, will eventually affect quality of life.  Chronic inflammation requires long-term or life-long treatments – not just the number of pills that need to be taken each day, but the number of years of having to take those pills.  Lupus is a marathon.

What is more, a person can suffer from more than one chronic condition at a time.  It is common for those living with lupus to also be diagnosed with overlap diseases, like Raynaud’s Phenomenon, Sjogren’s Syndrome, rheumatoid arthritis and others.  Each brings its own symptoms, treatments and build on the feeling that your body is out of control or constantly at war with itself.

 

Personal Relationships:

When you have an acute disease, people often express concern; they ask how you are doing, and the assumption is that you will probably get better because somehow medical science will “fix” the symptoms and eventually find a cure!  They feel bad for you, but they also may count on a “reasonable” timeframe for our illness.

With lupus as a chronic disease, people can also express concern – especially at first – yet, they may not know how else to react as they realize that you may not get better.  They do not know what to say; they do not know how to help.  Your continued illness can even make them both uncomfortable and frustrated due to its unpredictability, invisibility and beyond what they may feel is “reasonable.”

Your family may be your greatest source of support and understanding, but it is important to be aware of those who become your caregivers.  They also deal with fear for you, frustration and anxiety about your future and theirs as well.  It creates a “new normal” for everyone who cares for you.

Isolation and loneliness are natural parts of the human experience.  However, chronic disease like lupus can greatly exacerbate both and this can have a spiraling affect on symptoms and quality of life.  It has even been estimated that loneliness can be an increased risk for early mortality. When you repeatedly miss social events, when you have to leave parties or holiday dinners early, when you forget or avoid talking to friends on the phone or Zoom calls – these can lead to detaching from the very relationships that

 

The Workplace and Finances:

A chronic disease can cause issues with work as you run out of sick days, and as supervisors and coworkers possibly see their own jobs affected by your unpredictable schedule.  Even if you are lucky enough to have an understanding workplace, there still may be feelings of resentment from others that you are lazy or taking advantage of the situation.

Lupus is expensive!  The seemingly never ending doctor’s visits, numerous lab tests, pharmaceuticals, and unpredictable trips to the emergency room not only cost money, but time that can take away from more productive activities.  It is estimated that 86% of all healthcare spending in the US goes to chronic medical conditions.  Lupus

Tools for Dealing with the Chronic Challenges of Lupus

Much of what will help in navigating the chronic challenges of lupus can be condensed to two things:  take care of your self and communicate with others.  Of course, that is harder than it sounds!

Take care of yourself.  How?

Educate yourself about your condition.  The more you understand about lupus, its symptoms and what to expect, the easier it will be to plan and educate others.

Take an active role in your disease management.  Know your treatment plan; attentively observe your symptoms and any changes that take place, and set realistic expectations for yourself.  This also will help keep your family, friends and caregivers aware of what you need so that they can plan for themselves!

Be mindful of your finances.  Chronic, unpredictable illness can be a long term burden and this requires understanding how your insurance, and possibly social security benefits will cover the unexpected as well as your day-to-day expenses.  You should create a clear financial plan, budget yourself – and get help when you need it.

Take care of your emotional health.  Looking for support systems, support groups, and perhaps mental healthcare providers can help you manage your emotions, reduce stress and build the resiliency that is most needed for chronic illness.

 

Communicate with others.  How?

Express what you are feeling with others.  This can be a difficult line to walk.  Those around you need to know how you are feeling so that they can do their best to help.  Yet, you need to be sensitive to their needs and problems.  You do not want to overburden them or cause feelings of resentment. That can lead to them experiencing burnout or even guilt– and that will not help anyone.  At the same time, you need to let others know when you really need help!  This requires care on your part and it also means treating each person differently.

Everyone reacts in their own way to stress and uncertainty.  Find out what your friends and family need from you and how do they want you to communicate your needs to them.

Find a good metaphor for what you are going through.  Lupus is a very difficult condition to explain to others – especially the chronic and invisible natures of pain and fatigue.  By far the most popular is the Spoon Theory – created by Christine Miserandino – as a simple and effective way of explaining what it is like to live daily with the energy-draining lupus.

Prepare for your medical visits.  Medical visits can be all too brief.  In order to make the most out of each one, prepare for them ahead of time.  List not just your most noticeable, acute symptoms, but describe the subtle ways in which the chronic aspects of lupus are affecting your life.  Real, honest, accurate communication with your healthcare team is vital!

 

In Conclusion

Lupus is a disease with both acute and chronic conditions that can be devastating to quality of life – yet in different ways.  Acute symptoms can send you to the emergency room when you least expect it, and chronic symptoms can slowly drain your energy – degrading your everyday quality of life.  In order to navigate both faces of lupus, it is important to understand how they affect you and those around you in different way … and don’t give up!  There are plenty of tools to help and you are not alone!

 

 

References

Acute vs. chronic conditions. What’s the difference? (2016, August 11). National Council on Aging. https://www.ncoa.org/blog/chronic-versus-acute-disease/#:~:text=Acute%20illnesses%20generally%20develop%20suddenly,of%20time%E2%80%94months%20to%20years.

Holt-Lunstad, J., Smith, T., Baker, M., Harris, T., & Stephenson, D. (2015). Loneliness and social isolation as risk fators for mortality:  A meta-analytic review. Perspectives on Psychological Science, 10(2), 227-237. https://doi.org/10.1177/1745691614568352

Integrated chronic disease prevention and control. (2021). World Health Organization. https://www.who.int/chp/about/integrated_cd/en/#:~:text=Four%20of%20the%20most%20prominent,related%20major%20behavioural%20risk%20factors

Murrow, E. & Olglesby, F. (1996). Acute and chronic illness: Similarities, differences, and challenges. Orthopaedic Nursing, 15(5), 47-51. https://europepmc.org/article/med/8954463

Positive thinking: Stop negative self-talk to reduce stress. (2020, January 21). Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/positive-thinking/art-20043950

Tikkanen, R. & Abrams, M. (2020, January 30). U.S. health care from a global perspective, 2019: Higher spending, worse outcomes? The Commonwealth Fund. https://www.commonwealthfund.org/publications/issue-briefs/2020/jan/us-health-care-global-perspective-2019

Vos, T. (2016). Global, regional, and national incidence, prevalence, and years lived with a disability for 310 diseases and injuries, 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015. The Lancet, 388, 1545-1602. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5055577/pdf/main.pdf

World Health Organization. (2019). Global spending on health: a world in transition. https://www.who.int/health_financing/documents/health-expenditure-report-2019.pdf?ua=1

  

Author: The KFL Team

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All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.