Lupus – Spoon Theory and Beyond

Lupus is a disease in which the immune system becomes the enemy and starts attacking various cells of the body. Most people suffering from it have joint pains, skin rashes, fever, hair loss, fatigue, oral ulcers, and ailments of various organs. Both presentation and severity of the disease differ from person to person (1).

This disease differs from other chronic illnesses in its flow. Periods of remission and flares are characteristic for most people. Thus, there are days when a person may feel close to normal, and the very next week may feel severely ill. These flares are often unpredictable, though in some cases, a person may be able to identify the reasons of flares.

As with any chronic illness, one has to learn to cope with lupus, and this is where the spoon theory comes in.

Spoon theory for coping with lupus

This theory was mentioned in an essay by Christine Miserandino, who was suffering from lupus (2). It emerged when her friend asked her about the feeling of being sick. In this theory, a spoon is a metaphor for energy. To explain her sickness problem, Christine took all the twelve spoons on the table at that time, and told her friend that these spoons are like all the energy she has for a day. Thus, unlike healthy people who take unlimited energy for granted, people with chronic illness have to plan how to spend that limited energy. As a demonstration, she said that for each activity she has to give away one spoon, and if she does not plan her day properly, all spoons will be finished much before midday. Meaning that she would be depleted of energy, to carry on for the whole day. Surely, she can borrow a spoon or two, but then on next day, she will be left with fewer spoons.

The main lesson to be learned from this spoon theory, is that, with proper planning, and compromising, one can cope with the fatigue and pain of the disease. One has to choose wisely, what to do and what not to, during the day.

Spoon theory is about acceptance of your limits and planning accordingly. In this article, we go beyond this theory by proposing a practical action plan for coping with lupus, and ways of increasing the number of spoons to have for a day.

Act to have more spoons a day

Here are action and coping plans for the most common problems during the flares in lupus. It is not just a collection of tips, but rather a collection of time proven strategies to transform your days, although this does not mean that these activities and the coping ideas have to be followed as in an exact manner. Here we provide strategies; they can be adapted according to one’s individual symptoms and preferences. It is called an action and coping plan, as it has two elements, physical measures to follow and coping mentally (3).

Reducing the pain: People with lupus have to fight with physical and mental suffering. 

• Change your focus – try to concentrate on another part of the body, which is pain-free. So if you have pain in joints, spend few minutes focusing on your hand, try to make it warmer with your internal strength. It helps to divert attention from the painful part of the body.
• Detachment – this technique involves separating your painful part of the body from your mind. If you have pain in fingers, within your mind, detach them from the body, ask them to fly high in the room and stay there (4).
• Mental anesthesia – imagine injecting yourself a high dose of pain killer or local anesthetic at the place of pain.
• Positive imagination – this could involve imagining some beautiful place that you have always wanted to visit. It could be some isolated beach or your favorite hill station.

Relaxation: Relaxation helps you to keep yourself mentally and emotionally sound. It helps you to deal with the frustration of being ill (5).

• Deep breathing – here the technique is breathing deeply with the abdomen, rather than usual shallow breathing with the chest. It results in improved oxygen flow and relaxation.
• Mindfulness meditation – this technique involves concentrating on the present, rather than thinking about the past or worrying about the future. A person can sit in the meditation pose, concentrate either on breathing, or flicker of a candle, or on few repeated words.
• Yoga and Tai chi – one can practice either alone or join classes. They are known to reduce stress and anxiety, improve flexibility and muscular strength, and improve balance.
• Self-massage – you can massage different part of your body, several times a day. For better effect, you can buy aromatic oils or even some equipment. It gives great relaxation when combined with meditation.

Distraction: This is an effective way to change your mood, when you are feeling low.

• Go out to watch a movie, call a friend, start doing gardening or practicing anything you like a lot, clean your house, or even try your hand at something new like programming or painting.

Redefining: It is very efficient and serious method of coping with any chronic illness. It involves redefining many aims of your life (6). Like;

• Focus less on the carrier, or leaving the job and start working from home.
• Spend more time with family, especially with relatives or close friends.
• May involve even harsh decisions like changing your complete friend circle.

Vent emotions: It is an excellent way to get rid of accumulated pain, sadness, anger, and frustration. Just remember what Sigmund Freud wrote “Unexpressed emotions will never die. They are buried alive and will come forth later in uglier ways.”

• Talk to your friend – this is probably the best and most commonly practiced technique, share your feelings with someone you know well, tell them all the stories and theories after all this is how the spoon theory was born!
• Keep a diary – write regularly about all your pains and gains in it.
• Listen to the music that is related to your mood, if feeling sad, listen to your favorite blues, or any other music you associate your feelings with.
• If you want, just cry or even roll on floor and laugh.

Seek spirituality: This is one of the oldest methods to overcome pain and feel good. How we practice spirituality would differ and is a matter of personal choice and preferences, depending upon our religion, ethnic origins, race, belief. However, spirituality has been proven to have positive effects on health and well-being.

Seek emotional support: Having healthy and emotional relations with other are essential for good mental health. Emotional support comes from good relations, in which both parties give and take. 

• Ask support from family members – don’t hesitate and discuss your problems with your family members, spouse or mother, anyone you feel close to.
• Seek support from social organizations – if you think you do not have a trustworthy person around, you feel isolated, several voluntary organizations are providing social support.
• Seek support on virtual platforms – use the modern technology in your favor, this is now the most common way for finding the emotional support. People now more often make friends on social websites, many of them have dedicated forums to discuss the specific health and emotional problems.

We have discussed some of the most efficient and proven techniques for coping with physical and emotional problems related to chronic illness like lupus, and we hope that you would be successful in adopting some of these methods and strategies to overcome your pain.

References

1. Marcia Vital O of C and PL. Fast Facts About Lupus [Internet]. [cited 2017 Jul 31]. Available from: https://www.niams.nih.gov/health_info/lupus/lupus_ff.asp

2. Miserandino C. But You Don't Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino [Internet]. [cited 2017 Jul 31]. Available from: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

3. S M. Chronic Illness, Psychosocial Coping with.

4. Managing chronic pain: How psychologists can help with pain management [Internet]. http://www.apa.org. [cited 2017 Jul 31]. Available from: http://www.apa.org/helpcenter/pain-management.aspx

5. Merkes M. Mindfulness-based stress reduction for people with chronic diseases. Aust J Prim Health. 2010;16(3):200–10.

6. Bhatti Z, Salek M, Finlay A. Chronic diseases influence major life changing decisions: a new domain in quality of life research. J R Soc Med. 2011 Jun;104(6):241–50.