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Living with MS can impact the way that you think.
This may be especially true when you have symptoms like pain, emotional changes and fatigue, 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 life.
When 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:
These thought patterns cause problems by emphasising 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 positive thoughts about MS or pain. This would be unrealistic. Obviously, certain thoughts may not be positive, and that’s fine; however, focusing too much on these 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.
There 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, emotional changes and fatigue, we know that negative thoughts are related to having worse pain, upset or lower moods and worse fatigue. Importantly, they also set up how we react to those problems. If we believe that our pain will never get better, we will be sceptical 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 reduce pain because we do not think that is possible.
Second, these types of thoughts are inaccurate. In most cases, problematic automatic thoughts exaggerate negative aspects and minimise 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’ behaviours, positive thoughts can drive ‘positive’ behaviours. 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 make the most of life.
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:
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 draining.
Here are some examples of reframing that relate to coping with MS symptoms:
She thinks, ‘This pain is going to ruin my life.’
He states, ‘Because of my MS, I am no longer able to be a good parent.’
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.
Case studies are adapted from first person accounts of people living with MS, which may differ from the experiences of others.
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 |
---|---|---|---|
Step 1Identify the situation that causes negative thoughts | Step 2Describe the negative or unhelpful thoughts | Step 3Describe your emotions | Step 4Reframe your thoughts; generate alternative thoughts |
Step 1At the family reunion, I couldn’t keep up with everyone on the hike | Step 2I’m a burden to everyone | Step 3Guilt, sadness | Step 4My family is happy to see me. It is amazing to get to spend time with my family. I can hang out with my brother-in-law, who also has health problems |
Step 1At the family reunion, I couldn’t keep up with everyone on the hike | Step 2I used to lead the hikes. I should be able to do this! | Step 3Anger, resentment, defeat | Step 4I 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. |
Step 1At the family reunion, I couldn’t keep up with everyone on the hike | Step 2My balance and strength are just going to keep getting worse | Step 3Stress, worry | Step 4I 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 |
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 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.
Following 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 recognise 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. There is 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 behaviours. 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 behaviour, 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 behaviours 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:
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 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, centring, motivating, or helpful. These are sometimes called ‘coping thoughts’.
For example, how might these thoughts make you feel?:
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 personalised to you. Tips for generating your personal coping thoughts include:
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.
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 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.
This is not a replacement for advice from your healthcare professional or healthcare team. Please consult your healthcare team first and foremost about your multiple sclerosis and the self-management advice contained within this website.
Developed by the University of Michigan, provided by Janssen.
[1] Ehde DM, et al. Chronic pain in a large community sample of persons with multiple sclerosis. Mult Scler. 2003;9(6):605-611.
[2] Ehde DM, et al. The scope and nature of pain in persons with multiple sclerosis. Mult Scler. 2006;12(5):629-638.
[3] Ehde DM, et al. Chronic pain in persons with multiple sclerosis. Phys Med Rehabil Clin N Am. 2005;16(2):503-512.
[4] Svendson, et al. Pain in patients with multiple sclerosis: A population-based study. Arch Neurol. 2003, 60(8): 1089-94.