Living with MS can impact the way that you think. This may be especially true when you have symptoms like pain, fatigue, and depressed mood, that can spark negative or unhelpful thoughts. These thoughts may be about the way MS has affected your life, about how MS has changed the way you see yourself, or about how things will be for you in the future.
The way you think is important because your thoughts have a major impact on the way you feel and how you act. In addition, although your thoughts do not necessarily cause your symptoms, they can certainly make your symptoms seem worse and less manageable. Our goal is to help you change your unhelpful thoughts so that they do not get in the way of living your best life.
- Automatic thoughtsWhen a person is faced with a major health challenge or other stressful situation, it is common to think and worry about that challenge. It is so common and these thoughts happen so naturally that we call them “automatic thoughts”.
Unfortunately, automatic thoughts are often exaggerated, extreme or limited versions of reality that focus people on the negative aspects of their life. Here are some examples:
- Catastrophizing is excessive worry and/or prediction of a worst-case outcome. For example, a person in pain might think that, “My pain is never going to end.”
- Black and white thinking is when we see only two possible outcomes – one very good and one very bad. Few things in life are actually this way. Instead, outcomes usually fall along a range that can have varying degrees of “goodness” or “badness”. And, often even 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 is when a person focuses on negative events and ignores positive events. For example, think about the person who, despite their fatigue, leaves their house, joins friends for lunch, and has a wonderful time. However, they have to cut the outing a bit short due to their fatigue. A person who ignores the positive and magnifies the negative would focus on having cut the outing short and would discount the positive experience of enjoying time out with her friends.
- Prediction is when a person decides how an event will turn out before it happens. It is especially a problem when we predict a negative outcome. 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 are 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 MS, but oftentimes expectations for what one should be able to accomplish do not change.
These thought patterns cause problems by emphasizing the likelihood and impact of negative outcomes. These types of thinking also lead one to ignore more positive experiences and possible outcomes. Our goal is to help you bring your thoughts into balance.
Sometimes people misinterpret the message about negative thoughts to mean we should only have blissful thoughts about MS or pain. This would not be unrealistic. Obviously, some very realistic thoughts may not be positive. Focusing too much on negative thoughts, even if true, is not usually helpful. The intent here is to (1) be aware of your thinking as it can influence your feelings and symptoms and (2) if you identify any of the negative patterns above, attempt to challenge them before they take you down an unnecessarily negative path.
- The impact of these thought patternsThere are many problems with negative automatic thoughts.
First, they are negative. We know that negative thinking makes negative outcomes more likely and positive outcomes less likely. Across pain, fatigue, and depression, we know that negative thoughts are related to having worse pain, worse fatigue, and worse depression. Importantly, they also set up how we react to those problems. If we believe that our pain will never get better, we will be skeptical about opportunities to improve our pain. Then, efforts to improve pain may be less likely to work. Worse yet, we might even choose to skip an opportunity to get better because we do not think that getting better is possible.
Second, these types of thoughts are inaccurate. 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.
Third, they make it harder to have positive thoughts or think of better 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.
- Strategies for reframing thoughtsAn 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: (1) identifying negative thoughts, (2) challenging the negative thoughts, and (3) developing 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 the evidence or proof for the thought they are having. It is important to consider proof that supports the thought and 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 it last 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) 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.
Here are some examples of reframing that relate to coping with MS symptoms:
- Susie is having a difficult day with her pain. She thinks, “This pain is going to ruin my life.”
- When asked for the evidence for this, Susie notes that she had to cancel some plans yesterday because of her pain. However, she describes another recent day, with similar pain, where she was able to make different choices that allowed her to follow through with her plans for the day.
- Susie recognizes that an alternative thought could be, “Although my pain got in the way yesterday, I am also able to find ways to keep it from getting in the way like pacing and using relaxation methods.”
- Relative to the original thought, Susie feels more confident in her ability to manage her pain.
- Jim’s physical functioning has changed as a result of his MS. He states, “Because of my MS, I am no longer able to be a good parent.”
- Jim started by noting a number of things he was unable to do recently around the 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 things: 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, Jim recognizes that, “Although I cannot do some of the things for my family I was able to do before, I make many important contributions to raising my children.”
- Relative to the original thought, Jim 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 aspects out of proportion, we do not want anyone to pretend everything is fine when it is not. Instead, reframing is really 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.
- Susie is having a difficult day with her pain. She thinks, “This pain is going to ruin my life.”
- Steps to reframing
There are 4 main steps to reframing negative automatic thoughts:
Step 1: choose a situation that made you feel a negative emotion, like sadness, frustration, guilt, anger, or worry
Step 2: list the automatic thoughts that went through your mind.
Step 3: identify how the thought made you feel.
Step 4: looking at the evidence for your thoughts, think creatively to generate a more accurate and balanced thought.
Use the Thinking Differently Work Sheet in the Added Features section to practice these steps. Here is an example of how you would use the work sheet:
Step 1 Step 2 Step 3 Step 4 Identify the situation that causes negative thoughts Describe the negative or unhelpful thoughts Describe your emotions Reframe your thoughts; generate alternative thoughts At the family reunion, I couldn’t keep up with everyone on the hike I’m a burden to everyone. Guilt, sadness 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 used to lead the hikes. I should be able to do this! Anger, resentment, defeat 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. My balance and strength are just going to keep getting worse. Stress, worry 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.
TO DO: Use the Thinking Differently Work Sheet every day for at least a week to begin to practice this skill. Use the work sheet in the future any time you notice a situation where you feel upset.
- Strategies for letting thoughts come and goFollowing the steps below will allow you to practice the very basic skill of noticing and letting your thoughts go.
As you could see in the previous section, reframing thoughts takes work. In many cases, this is important work that might be helpful to you. The automatic thoughts may be causing problems and eliminating that problem may be the best route. However, in some cases, a quicker and simpler strategy to working with unhelpful thoughts may be better.
This different strategy is to let the negative thoughts remain and to recognize thoughts are just thoughts. Your thoughts do not necessarily 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. There is the possibility that we can have these thoughts without holding, owning, or deciding based on those thoughts. Instead, we can have the thought, acknowledge its presence, and allow it to pass through without grabbing our focus.
Letting thoughts come and go is a skill that takes practice. With enough practice, a person can become very skilled at not letting negative thoughts affect them. If you enjoy this section, you might choose to learn more about it. There are resources at the end of this module for those who would like to learn more. However, there is also a great opportunity to make improvements with some simple strategies.
Let’s take the example thought of, “I wish I didn’t have this MS pain.” For the typical person, this thought could lead to many additional thoughts and behaviors. For example, some might go from this initial wish to being bothered by their pain (“It is really getting in the way of my life”) or even seeing worst case scenarios because of their pain (“I am never going to achieve what I wanted in life because of this pain”). Others might change their behavior, such as spending less time being active in hopes of decreasing their pain.
The individuals in the previous example are “owning” that thought. They wish they did not have the pain and, as a result, act by changing their thoughts and/or behaviors to try to fix this unpleasant situation.
One might argue, however, that it is perfectly reasonable to wish that one’s pain were gone. In fact, it could be argued that there really is nothing to do about that. It is a wish that can exist without further thought or action. And it could be as simple as adding the stem, “I am having the thought that…” to the beginning of that prior wish: “I am having the thought that I wish I didn’t have this MS pain.”
While there are many different strategies for letting go of our thoughts, one strategy includes becoming more aware of your body as a way to slow down, become more aware, and gain perspective on your thoughts. For example, you can follow these steps to work at letting go of your thoughts:
- Steps for letting go of thoughtsStep 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 am 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 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, getting good at letting your thoughts go is a skill that must be practiced. Skills from the Relaxation Module can also help you in developing your skills at letting your thoughts go.
One 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, how might these thoughts make you feel?:
- “I know there are things I can do to manage my pain (or stress, 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 fatigue, think of statements specific to coping with fatigue that you find helpful, soothing, or hopeful.
- Make sure your coping thoughts are positive but truthful. For example, if you struggle with pain, thinking, “I won’t feel pain 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 pain” or “this pain flare up 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 back to your coping card or coping thoughts regularly, so they become part of your self-management toolkit.
- Conclusion and ResourcesOur 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 have given 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.
If you are interested in learning more about these strategies:
- Consider these self-help books:
- For changing thoughts:
- Wilding, C. (2010). Teach Yourself Cognitive Behavioural Therapy. Teach Yourself Books: London.
- Fraser, R. T., Kraft, G. H., Ehde, D. M., & Johnson, K. L. (2006). The MS Workbook: Living Fully with Multiple Sclerosis. New Harbinger Publications: Oakland, CA. See Chapter 5 for additional strategies.
- 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
- For changing thoughts:
If you would like more help with working with your thoughts, ask your primary care provider, neurologist, 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 on the desired life path.
- Consider these self-help books: