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Managing Lupus Stress More Effectively by Changing Your Thoughts and Actions

Adapted from a talk at The SLE Workshop at Hospital for Special Surgery


Roberta Horton, LCSW, ACSW 
Director, Department of Social Work Programs
Hospital for Special Surgery

People with lupus often have recurring negative thoughts, such as:

"This illness will never go away;"
"Flares will cause complications or even kill me;"
"People will reject/abandon me;"
"I won't be able to take care of myself;"and
"I can't" (fill in the blank, e.g. I can't do my job anymore or go on a trip or lift the laundry, etc.).

These negative thoughts can affect behavior and cause negative feedback loops. For example, fear of being dependent may prevent you from accepting needed and offered assistance from people who love you. This causes you to have feelings of isolation that your behavior - not the disease - caused. Or fear of not being able to climb a hill leads you to not going on a trip that you would really enjoy - even if you have to sit out the part where others climb a hill. Or fear of being rejected leads you to put up a wall so that you don't give relationships a chance.

Negative thoughts often exist for a reason, although sometimes we have been thinking that way for so long that we forget the reason why they arose. And negative thoughts are very hard to give up. So they must serve some positive role, such as helping us deal with fear of change or failure. But when you are consumed with negative thoughts and have a vision of a sad past, negative present and unhopeful future - when you feel stuck - it's a form of depression. You don't know what it's like to step out of that rut. Yet it's a comfort zone because it may protect you from risk, such as the risk of failure or rejection.

Developing Awareness of Negative Thoughts

The first step in dealing with negative thoughts is to develop our awareness of them. Then we can think about whether we are willing to risk changing one or more of them in order to open ourselves up to a fuller and more satisfying life.

It's our thoughts and belief systems that often cause us upset - that is, not just the event that occurs but how we think about that event that troubles us. Here's how that might happen:

  1. The initial stressor may be that someone invites you to a party.
  2. Your negative thoughts say that you will get too tired from partying and go into a flare, or that you will meet someone who does not return your interest.
  3. The bad consequence is that you don't go to the party, stay home alone, and feel lonely.

Clearly, the bad consequence arises not from the party invitation but your negative fears about it. Instead of enduring that upset, you can look at the possibility of challenging your own thoughts and changing the sequence of events. You can tell yourself that you will enjoy being among interesting people and that you will take it easy - not dance every dance - so that you don't get over-tired. Then you might go to the party and enjoy yourself. You might even meet someone who returns your interest!

Consider another sequence:

  1. You're having a bad flare and are too fatigued to go shopping.
  2. Your negative thoughts tell you that friends will reject your request for help - so you don't ask for it.
  3. The consequence is that you don't get the nutrition you need or you spend money you can't afford getting groceries from a more expensive store that delivers.

Again, the bad consequence arises not from the flare and fatigue, but your negative thoughts about how friends might react to it. Instead, you could tell yourself that "helping each other is part of what friends are for," and then ask for their help. Then, they would likely be glad to shop for you - and feel good about themselves for being helpful. They would be glad that you feel close enough to them to ask for help and, along the way, learn to understand what lupus is about - which will help your relationship and lead them to have more realistic expectations from you in the future.

Some of our negative thoughts relate to fear of losing control. Control is a very appealing illusion that we maintain, but it is an illusion. Life after being diagnosed with lupus is different. You are still the same person, but now you know there are some things you cannot control. So you need to look at your life through a different lens. And all the big events in our lives are similar - we remain the same people but we are changed in some way. We need to learn to see differently when we look through a different lens. It can be frightening - and that can lead to negative thoughts unless we look very carefully and evaluate our new reality carefully.

So we need to learn to react for reality, rather than to the fears in our minds. Your willingness to look at how your thoughts may be shaped by your interpretation of reality can be a big challenge - but a worthwhile one - a path to finding what's meaningful and emotionally rewarding for you in life.

Distorting Reality with Negative Thinking

A first step in doing that is looking at the different ways we distort reality with our thinking (called cognitive distortions).

  1. All-or-Nothing Thinking: You see things in black-and-white categories. If your performance falls short of perfect by even one tiny notch, you see yourself as a total failure.
  2. Over-generalization: You see a negative as a never-ending pattern of defeat.
  3. Mental Filter: You pick out a single negative detail and dwell on it exclusively so that your vision of all reality becomes darkened, like the drop of ink that colors the entire beaker of water.
  4. Disqualifying the Positive: You reject positive experiences by insisting that they "don't count" for some reason or other. In this way, you maintain a negative belief that is contradicted by your everyday experiences.
  5. Jumping to Conclusions: You make a negative interpretation even though there are no definite facts that convincingly support your conclusion. This category includes: mind-reading, in which you arbitrarily conclude that someone is reacting negatively to you and don't bother to check it out; and fortune-telling, in which you anticipate that things will turn out badly and feel convinced that your prediction is an already established fact.
  6. Magnification (Catastrophizing) or Minimization: You exaggerate the importance of things, or you inappropriately shrink things until they appear tiny. You tend to magnify the negative and minimize the positive.
  7. Emotional Reasoning: You assume that your negative emotions always reflect the way things really are - "I feel it, therefore it must be true." - and you never really check it out.
  8. Should Statements: You try to motivate yourself with "shoulds" and "shouldn'ts," as if you had to be whipped and punished before you can be expected to do anything. "Musts" and "oughts" are also offenders (related to all-or-nothing thinking). The emotional consequence is guilt when you do it to yourself - or anger, frustration, and resentment when you direct these expectations at others and they don't perform your "shoulds".
  9. Labeling and Mislabeling: This is an extreme form of over-generalization that involves describing an event with language that is highly colored and emotionally loaded. Instead of describing your error, for example, you attach a negative label to yourself -- "I'm a loser." Remember: labels belong on jars, not people.
  10. Personalization: You see yourself as the cause of some negative external event for which, in fact, you were not primarily responsible. You personalize everything. (In general, women tend to personalize and internalize events - "I should have...," whereas men tend to externalize them - "Oh, that was just bum luck.")

Changing Automatic Negative Thoughts

Recurring negative thoughts that you have every day - "I'm never going to get over this flare, I'm never going to be able to work again, I'm never going to have a boyfriend," etc. - can become automatic thoughts. They come to our minds immediately without our awareness.

In order to help better manage our stress, we need to become more aware of such thoughts and learn to challenge them with a healthy dose of reality and be able to change them. We can't change all our negative thoughts at once, but we can work on one or two of them at a time. Ideally, you choose one or two that you feel have the best chance of success for changing your life with lupus in some positive way.

For example, you might think: "The weather's getting warm early; my lupus will probably flare all summer, and I'll never get out of the house." This represents four different types of negative thoughts: catastrophizing, jumping to conclusions (fortune-teller error), over-generalization, and all-or-nothing thinking." Consider the reality and how to dispute that negative thinking.

Instead, here are some more rational responses to consider: "Since my lupus sometimes flares in the summer heat and sun, I'm going to try to pace myself by doing cool indoor things like going to the movies and to avoid being out for long in the hottest time of the day. And when I do go out in the day time, I will wear a lightweight, long sleeved shirt and a big hat or carry an umbrella."

Now it's your turn. Think about your negative thoughts. Make a list of them. Note which types of negative thinking they represent. Then try to come up with rational responses - instead of those cognitive distortions.

Note: The ten cognitive distortions above, as well as some of the theories in this session, were drawn from Feeling Good: The New Mood Therapy (3rd edition) by David Burns (New York: Avon Books; 1999). It's an excellent book for helping you identify your negative thoughts and talk back to yourself to improve your mood.


Learn more about the SLE Workshop, a free support and education group held monthly as HSS.

Summary prepared by Diana Benzaia.

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