Improve symptoms with your thinking. Living with sickle cell symptoms can generate negative or unhelpful thoughts. These thoughts may be about the way sickle cell has affected your life, about how symptoms have changed the way you see yourself, or about how things will be for you in the future.
What you think can similarly contribute to a worsening of your symptoms. Negative thoughts produce negative emotions which in turn influence how pain and fatigue signals are processed in the brain. This can make pain and fatigue worse.
The goal of this Reframing module is to help you learn how to change unhelpful thoughts so that they do not get in the way of living your best life. You may not be able to directly change your symptoms or your emotions, but you can change the way you think.
Our ability to think about and understand our life experiences is one of our greatest strengths. However, just like so many strengths, it also carries the risk of getting in our way. Our hope is that the ideas shared in this section will give you the first steps towards focusing your thoughts on supporting your wellbeing.
The ability to change your negative thinking is a skill that improves with practice. You get out of it what you put in.
Automatic Thoughts Affect Your HealthBack to top
When you first learn how to drive a car, ride a bike, or kick a soccer ball, it can be difficult to coordinate all the necessary behaviors to produce the desired performance. Over time however the behaviors become more skillful and the need for thinking about each part of the task becomes unnecessary. When you can free your mind from concentrating on a task and just simply do it, we call this "automatic thinking". For many situations, automatic thinking is a good thing as it is highly efficient thinking and frees up our mind to focus on other important matters or to get more enjoyment out of the task we are doing.
Automatic thinking, however, can have a downside when it comes to pain and other symptoms. When you first became sick, you may have tried to avoid tasks that would make you feel worse. This might include avoiding social outings, cutting back on exercise to simply rest and sleep. We learn that these avoidance behaviors are necessary to get through a bad sickle cell flare. We might also think about how awful the pain and other symptoms feel and how limiting they can be for our life plans. With time, thoughts about avoiding activity to avoid pain and other symptoms become automatic.
Although avoiding exercise and social activities can help you recover in the short term, these are exactly the wrong approaches to use for dealing with chronic symptoms. With chronic symptoms like pain or fatigue, you need to engage in paced physical activity, you need to engage in social activities, and you will likely need to engage in some form of work. It is important to become aware of your automatic thoughts and potentially rethink them.
Easier said than done. Because automatic thoughts evolve out of learning, it can be quite difficult to challenge these thoughts and retrain your mind to think differently. Automatic thinking can be categorized into specific thinking styles – all of which produce efficiency in thinking but potentially unwanted negative consequences when it comes to managing your symptoms.
What Are Negative Thought Patterns?Back to top
We know that negative automatic thought patterns make negative outcomes more likely and positive outcomes less likely. We also know that negative thoughts are related to having worse pain, worse fatigue, and worse depression. Importantly, they set us up for how we react to new problems or opportunities. If you believe that your pain and other symptoms will never get better, you are likely to be skeptical about opportunities to improve your symptoms. Of course, then any efforts for improvement run a higher risk of failing for you. Worse yet, you might even choose to skip an opportunity to better manage your symptoms if you think that getting better is impossible.
To be efficient, automatic thinking leaves out a lot of information. Thus, if the situation changes (as in shifting from acute to chronic pain), your learned automatic thoughts for acute pain may be inaccurate for chronic pain. In most cases, problematic automatic thoughts exaggerate negative aspects and minimize positive aspects. This creates an unnecessary and inaccurate imbalance of thoughts that focuses on negative events or outcomes.
Just as negative thoughts can drive "negative" behaviors, positive thoughts can drive "positive" behaviors. If a person with pain believes they can function or can see an improvement in their pain, they will be more likely to do the things that will improve their quality of life. Having more positive thoughts, therefore, gives you the greatest opportunity to get better and make the most of the life that is in front of you.
Here are some examples of negative automatic thought patterns:
- Catastrophizing: This refers to excessive worry and/or prediction of a worst-case outcome. For example, a person in pain might think "My pain is never going to end" or "This is the worst thing that could happen to me".
- Black and White Thinking: This happens when we see only two possible outcomes – one very good and one very bad. Few things in life are this way. Instead, outcomes usually fall along a range that can have varying degrees of "goodness" or "badness". Often negative things also have some good parts to them. People who think this way might note that "Everything went wrong today", even if only one thing went wrong that day.
- Ignoring the Positive: This happens when a person focuses on negative events and ignores positive events. For example, think about the person who, despite their chronic symptoms, leaves their house, joins friends for lunch, and has a wonderful time. However, they must cut the outing a short due to their pain or fatigue. A person who ignores the positive and magnifies the negative would focus on having to cut the outing short and would discount the positive experience of enjoying time out with her friends.
- Prediction: This happens when a person decides how an event will turn out before it happens. It is a problem when we expect negative outcomes. For example, an individual might wake up and think, "I know today is going to be a bad day" despite no sign that today will be better or worse than the day before.
- Should Statements: This happens when a person thinks "I should do this" or "I must do that". These thoughts can cause a feeling of pressure, stress, and resentment. Thoughts about what a person should or should not do can be especially upsetting because abilities change with health conditions, but often, expectations for what one should be able to accomplish do not change.
Note: When we discuss the importance of monitoring or changing negative automatic thinking, we do not mean to imply that you should be blissful about your symptoms or think unrealistically. Quite the contrary. It is best to be heavily grounded in the reality of your life situation which oftentimes is not as awful as your negative automatic thoughts would have you believe. The intent here is to:
Be aware of your thinking as it can influence your feelings and symptoms.
If you identify any of the negative patterns above, attempt to challenge them before they take you down an unnecessarily negative path.
What is Reframing?Back to top
An important strategy for managing thoughts is called "reframing." A person who uses this strategy works to balance their way of thinking so that it is not overly negative. This requires three key steps:
- Identify the negative thoughts.
- Challenge the negative thoughts.
- Develop alternative thoughts.
We have already discussed negative thoughts, so now we will focus on challenging the negative thoughts and developing alternatives.
When we ask individuals to challenge negative thoughts, we start by asking them to tell us about the evidence or proof for the thought they are having. It is important to consider both the evidence that supports the thought and the evidence that challenges the thought. For example, in the case of the catastrophic thought that, "The rain will never stop," a person would provide evidence about rain, such as how long it has rained, when last it did not rain, and any evidence that supports the belief that it will rain forever.
The next step is to come up with different, more accurate thoughts based on other evidence that is being ignored or forgotten. If the person in the rain example noticed that: (a) it has rained for six straight days, but (b) it was sunny before that, (c) it is a rainy time of year, and (d) it rained for 11 straight days at this time last year before there was a sunny day, they could come up with a more balanced thought. A more accurate thought could be, "Even though it feels like the rain will never stop, it is actually common for it to rain a lot this time of year. It will eventually stop raining." This way of thinking has the benefit of being more accurate and less emotionally upsetting. Training yourself to use these more balanced thoughts as automatic thoughts can reduce emotional negatively and thus lessen symptom intensity.
Here are some examples of reframing that relate to coping with pain and other symptoms:
Keyante is having a difficult day with her fatigue.
Keyante thinks, "This fatigue is going to ruin my life." She feels this way because she had to cancel some plans yesterday because of her fatigue.
However, she also remembers another recent day when she had similar fatigue but was able to make different choices that allowed her to follow through with her plans.
To reframe her situation, Keyante thinks, "Although my fatigue got in the way yesterday, I can find ways to keep it from getting in the way all the time like pacing."
Compared to the original thought, Keyante feels more confident in her ability to manage her fatigue.
Leon’s physical functioning changed due to symptoms of sickle cell. He thinks, "Because of my long-term symptoms, I am no longer able to be a good parent."
Leon started by thinking about the things he could not do around his home. He admits these limitations are the reason for this thought. When pressed to think of ways he has contributed to his family as a parent, he lists many: He helped his daughter with her homework; he read to his son before bedtime; and he made decisions with his wife about an upcoming birthday party.
As a result, Leon recognizes that, "While I can’t do some things for my family that I could do before, I am helping with raising my children in many important ways."
Relative to the original thought, Leon feels better about his parenting.
It is important to know what reframing does and does not accomplish. Reframing is not about creating an artificially positive or fake scenario. Just as we do not want people blowing negative thoughts out of proportion, we do not want anyone to pretend everything is fine when it is not. Instead, reframing is about having thoughts that more accurately reflect the evidence. Most importantly, this more balanced prediction typically means thinking about a better, or at least "less negative" outcome.
How to Reframe Your ThoughtsBack to top
There are four steps to reframe your thoughts:
- Choose a situation that made you feel a negative emotion, like sadness, frustration, guilt, anger, or worry.
- List the automatic thoughts that went through your mind.
- Identify how the thought made you feel.
- Looking at the evidence for your thoughts, think creatively to generate a more accurate and balanced thought
Learning to reframe your thoughts takes practice over many days and weeks. As you practice noticing, questioning, and changing your negative automatic thoughts, it should become easier.
To practice these steps, create a flow chart like the one below.
STEP 1: Identify a specific situation that causes you to have negative thoughts
Family Reunion Example:
- “At the family reunion, I couldn’t keep up with everyone on the hike.”
STEP 2: Describe the negative or unhelpful thoughts
Family Reunion Example:
- “I’m a burden to everyone”
- “I used to lead the hikes. I should be able to do this!”
- “My balance and strength are just going to keep getting worse.”
STEP 3: Describe your emotions
Family Reunion Example:
- Guild, sadness
- Anger, resentment, and defeat
- Stress, worry
STEP 3: Reframe your thoughts and generate different thoughts
Family Reunion Example:
- “My family is happy to see me. It is a blessing to get to spend time with my family. I can hang out with my brother-in-law, who also has health problems.”
- “I have always been the kind of person who tries my best no matter what. I am doing the best I can right now. I can play other roles in my family.”
- “I can maintain my functioning by being as active as possible. My physical functioning may hold steady or get better. I have no way of knowing what the future holds.”
What is Letting Thoughts Go?Back to top
One strategy for working on negative thoughts is to recognize that they are simply fleeting ideas. Your thoughts do not define you. Your thoughts do not necessarily define what is really going on.
Automatic thoughts become problems when we believe the thought, hold on to that thought, own that thought, and make life decisions based on the thought. For example, let's start with a sample thought:
- "I wish I didn't have these symptoms." Some people might go from this initial thought to being bothered by their symptoms ("Pain is really getting in the way of my life" or "I am never going to achieve what I wanted in life because of these awful symptoms"). Based on this initial thought, some individuals might also change their behavior in ways that are not helpful like spending less time being active in hopes of decreasing their pain and other symptoms.
Instead, we can have thoughts without retaining, owning, or acting based on those thoughts. Instead, we can have the thought, acknowledge its presence, and allow it to pass through without grabbing our focus. For example, let's start with the same sample thought: "I wish I didn't have these symptoms."
- In response, one can realize that it is perfectly reasonable to wish that sickle cell symptoms were gone. This is simply a wish and can exist without further thought or action.
- You might add something to the thought by saying "I am having the thought that I wish I didn't have these symptoms."
- This strategy isolates the thought for what it is, "just a thought" rather than a stimulus for additional negative thinking, action, or emotions.
Letting thoughts come and go is a skill that takes practice. With enough practice, a person can become very skilled at letting thoughts pass through their minds without being affected by them.
How to Let Your Thoughts GoBack to top
Following the steps below will allow you to practice the very basic skill of noticing and letting go of thoughts.
Step 1: Adopt a relaxed posture, whether you are sitting or standing. Pay attention to how you are breathing. Close your eyes if possible. Ask yourself "What am I experiencing right now?" Think about your emotions, what you are feeling in your body, and what thoughts you are having.
Step 2: Start to imagine that you are experiencing your thoughts in a new way. For example, if you are having anxious, racing thoughts, imagine that your mind is like a monkey jumping from branch to branch. Each branch is a new thought that you can just notice and let go of as you jump to another thought. Or, imagine your thoughts as speeding trains coming into and leaving the train station. Perhaps instead of racing thoughts, you have a thought that is stuck, like a boot stuck in thick mud.
As you observe your thoughts in a new way, picture the imaginary screen in detail and continuously bring your focus back to your body; notice your breathing and what you are feeling in your body. Whatever imagery works best for you, imagine your thoughts to be something else (a monkey, train, boot, or something else) and just observe them. Just notice the thoughts and their effects on you. Notice that they are just thoughts. And then let them go. Allow the monkey, train, boot etc. to dissolve.
Just like reframing, letting your thoughts go is a skill that takes practice. Skills from Relaxation can also help you in developing your skills at letting your thoughts go.
How to Think Helpful ThoughtsBack to top
An additional strategy is to deliberately think positive, realistic, helpful thoughts. When feeling stressed or uncomfortable, you can coach yourself through the situation by focusing on thoughts that you find reassuring, centering, motivating, or helpful. These are sometimes called "coping thoughts".
For example, think about how these thoughts might make you feel physically or emotionally:
- "I know there are things I can do to manage my pain (or stress, or insomnia, or fatigue)."
- "I am uncomfortable at the moment but can handle it if I focus on deep breathing."
- "I have been through difficult things before and know I will get through this."
- "I can handle this."
- "This, too, will pass."
- "Stay focused on the present. What do I need to do right now?"
- "Take a slow, deep breath."
- "This is not really an emergency. I can slow down and think about what to do next."
These thoughts tend to promote positive feelings, make you feel hopeful, and help you cope with symptoms.
Coping thoughts are most helpful when they are personalized to you. Tips for generating your personal coping thoughts include:
- Think about reassuring thoughts you have used before. What has worked in the past?
- Come up with statements that are specific to your situation. For example, if you are bothered by pain, think of statements specific to coping with pain that you find helpful, soothing, or hopeful.
- Make sure your coping thoughts are positive but truthful. For example, if you struggle with cognitive fogginess, thinking, "I won't ever feel foggy again" probably won't help as it isn't truthful. Instead, a more truthful and helpful thought might be, "I can use my self-management skills to reduce the impact of feeling foggy" or "this bout of fogginess will pass, just as others have."
- Keep your coping thoughts short and easy to remember. You may even want to pick one or two calming thoughts as your "mantra"/go-to statements.
- What would a supportive friend say to you?
It can be difficult to remember your coping thoughts when under stress or feeling bad. Thus, we recommend that you write out several coping thoughts on a small card (a "coping card") or keep them readily available on your mobile device so that you can easily read them when you need to. You might even want to write out different statements for different situations or symptoms; for example, have a few coping thoughts handy for pain, and a few more for fatigue. Refer to your coping card or coping thoughts often, so they become a regular part of your self-management toolkit.
Videos on ReframingBack to top
Further Reading and Other ResourcesBack to top
For changing thoughts:
- Wilding, C. (2010). Teach Yourself Cognitive Behavioural Therapy. Teach Yourself Books: London.
For learning to let your thoughts go:
- Hayes, S. C. & Smith, S. (2005). Get Out of Your Mind and into Your Life. New Harbinger: Oakland, CA.
- Kabat-Zinn, J. (2013). Full Catastrophe Living: using the wisdom of your body and mind to face stress, pain, and illness. Random House Publishing Group, New York, NY.
Reframe Your Thoughts with the Help of a Doctor
If you would like more help with working with your thoughts, ask your primary care provider, specialist physician, or other trusted provider for a referral to a psychologist, social worker, or counselor. You can request a therapist trained in health psychology and cognitive-behavioral therapy (CBT), which is focused on changing thoughts and behaviors, or Mindfulness-based interventions or Acceptance and Commitment Therapy, which are focused more on letting go of thoughts and continuing your desired life path.