Whether you have been recently diagnosed with lupus or have been living with it for many years, learning to live with, what can be a very debilitating disease, is not an easy task. The ways in which this disease can physically and emotionally affect a person varies widely from patient to patient.
One thing that is consistent when coping with a chronic illness like lupus, is the undeniable toll that it takes on the mind and body.
There are many challenging feelings that will be faced and it is important to know that all of them are normal. The power comes in gaining the understanding of where those feelings are stemming from, so that you are better able to develop techniques for learning to cope with them. With the right tools, support, education, you can ultimately lead a positive and productive life with lupus. The pharmaceutical treatments used in lupus can also take a toll on the body and mind, a topic we will be discussing in our blog on lupus treatments and medications.
The Visible Effects of Lupus and/or Ramifications from Treatment- The corticosteroids that are often prescribed to treat lupus can cause visible weight gain. You may also suffer from various rashes or ulcers, such as the Malar or Butterfly Rash, which is common in many lupus patients. Raynaud’s Syndrome can cause a change in skin color in the extremities. Visible symptoms of lupus can cause insecurity, self-esteem issues and depression.
Physical Symptoms Such as Pain, Fatigue- Learning to live with seemingly relentless chronic symptoms like pain and fatigue can absolutely take their toll on your state of mind, leading to frustration and even a feeling of hopelessness. Pain can also cause difficulties sleeping, which then creates the fatigue cycle that can make completing daily tasks challenging.
Physical Limitations with Work and Activities- Symptoms such as fatigue and pain can limit the level of activity you are now able to sustain. This may cause difficulty with keeping up your normal pace at work and affect the ability to enjoy or participate in your free-time activities as well. These limitations can cause stress, depression, and potentially new financial burdens due to the need to cut back at work or even leave your job entirely.
Feeling Socially Isolated- You may feel alone and isolated for many reasons. Perhaps you feel that no one understands what you are going through or that it is just too hard to explain. You may feel too weak to participate in your regular social activities and begin to let those go as your energy fades, especially during a flare. You may not be as physically confident in your appearance and choose to isolate yourself socially for that reason. If you are no longer working, you may feel as though you have lost your sense of purpose and are now separated from yet another social aspect of your life.
Difficulty within the Family and Other Close Personal Relationships- Because lupus is often invisible, it may be difficult for those closest to you to understand what you are experiencing. You may face many who doubt the veracity of your illness, believing it is all in your head. This can be extremely painful, frustrating, causing anger and resentment. You may not be able to care for your house or family the way you or they are used to, and that can lead to feelings of depression, and even guilt. Our blog on parenting with a chronic illness may provide some helpful tips.
Concerns About the Future- Because lupus is so very unpredictable, you may have anxiety and fears about what is to come. How will it affect your body later? Will it progress? Will you be able to take care of your needs both financially and physically in the coming years? Worry and stress are not friends of lupus and can even exacerbate flares, so it is important to find coping tools to help alleviate these feelings of stress.
Cognitive Dysfunction (Lupus Fog)– Forgetfulness and difficulty thinking are very common complaints among lupus sufferers. These “fogs” or feelings of fuzziness (as they are often described) typically coincide with periods of higher disease activity or flares. Feeling that you are forgetting simple tasks or to-dos can be very frustrating. This can also cause frustration on the part of those closest to you who may not fully understand why you are forgetful. This can intensify your feelings of depression and isolation.
Moodiness and/or Changes in Personality- The disease process or even the medications associated with lupus can cause these often unpredictable changes in moods and personality characteristics. Anger and irritability can be difficult to deal with, both for you and those around you.
Get Regular Exercise- Low impact activities can be especially beneficial for lupus sufferers. Walking, swimming, and cycling, for example, can reduce muscle stiffness, boost muscular strength, prevent osteoporosis, relieve stress, and assist in better sleep. Not to mention the obvious benefits of helping protect your heart and cardio-vascular system.
Quit Smoking- We know how dangerous smoking is to everyone, but it can actually speed up and worsen the disease in lupus patients. It is never too late, quitting now will immediately begin to reverse the negative effects of smoking.
Get Enough Rest- Resting the proper amount (aim for at least seven hours per night) can help alleviate the fatigue so commonly associated with lupus. Lupus sufferers can find this difficult, but some tips to achieve a more restful night are: keep a regular sleep schedule, keep electronics out of the bedroom (create a sleep-only zone), and try to avoid physical activity and foods too close to your bedtime.
Avoid the Sun and Even Indoor Fluorescent Lighting-Photosensitivity is common in lupus and can exasperate and even cause certain lupus conditions leading to a lupus flare. Being sun-smart means staying out of the sun, wearing sunscreen with SPF of at least 30 that blocks both UVA and UVB rays, covering up with a hat and long sleeves and pants when out in natural sunlight avoiding the most intense times during the day between 10 a.m. -4 p.m. Indoor lighting can also give off these potentially harmful UV rays, so keep that in mind when in the workplace or even at home.
Ward off Infections- Those who suffer with lupus are more susceptible to infections. Wash your hands often with warm soapy water, avoid individuals who have any contagious condition and avoid touching your mouth, eyes, and nose. Check with your physician as to whether certain immunizations and/or vaccines are the right choices for you.
Manage Pain-Natural pain management can do wonders for the body and soul as the joint and muscle pain associated with lupus strikes. Try taking hot showers or baths, or finding other natural options that work well for you such as yoga, tai chi, acupuncture and chiropractic.
Manage Mental Well-Being- As stated above, the broad reaching emotional ramifications of coping with lupus can be devastating. It is important to be mindful of your mental well-being. If you are experiencing symptoms like overwhelming and ongoing sadness, uncontrollable crying, anger, frustration, difficulty concentrating, it is suggested that you seek help from a mental health expert, as you may be experiencing depression. Our blog on Lupus and Depression may be a good resource.
It is important to allow yourself to accept the feelings and emotions that you may be experiencing, and acknowledge that you have good reason to feel this way. But know, too, that even though you may feel powerless, you do still have power. Coping with lupus or any other chronic illness can and will be difficult, but by learning the proper techniques and tools, your life with lupus can still be positive and productive.
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*All images unless otherwise noted are property of and were created by Molly’s Fund Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Molly’s Fund Fighting Lupus. **All resources provided by Molly’s Fund 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 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 medical provider with any specific questions or concerns.
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