Hello my Zebras and Spoonies! Thank you for coming and hanging out with me today. I am glad that you are here.
Today I want to revisit the topic of how I cope with my chronic illness. I made a previous post about this that focused on the philosophy that I use when thinking about my chronic illness that allows me to better manage the challenges I face. You can read that here:
You can also listen to the pod cast here:
But I want to revisit the topic to talk about it from a more practical perspective. I want to talk about some coping skills or tools that you can use to help get you through the tough times. As I got to working on this, I realized that there was a lot of material here, so I’ve broken it into two parts. The second part will post on Friday.
Framing is the process of defining the context or issues surrounding a question, problem, or event in a way that serves to influence how the context or issues are perceived and evaluated. We do this all the time. We value some things over others and frame things based on those values. This process happens without active thought. But we can choose to become active in the process through reframing. This is a process of re-conceptualizing a problem by seeing it from a different perspective. Altering the conceptual or emotional context of a problem often serves to alter perceptions of the problem’s difficulty and to open up possibilities for solving it. Sometimes, we need an outside perspective to achieve a reframing or frame shift. This other perspective can be a therapist or a friend, but it is important that they are someone who is going to be willing to challenge your thought processes and perspectives.
Cognitive reframing, whether it is practiced independently or with the help of an outside perspective, can be a helpful way to turn problems or negative thoughts into opportunities for change and growth. With practice, you can learn to remind yourself that your initial conclusion is only one possible explanation. It’s easy to get into the mindset that your outlook is the only way to look at a problem. Cognitive reframing teaches you to ask yourself questions like, “Is there another way to look at this situation?” or, “What are some other possible reasons this could have happened?” Pointing out alternatives can help you see things from another view.
As we shift our thinking about our situation, there is a change in emotional tone and the meaning that we give to our life circumstances. We can choose to move our experience from a negative frame to a more hopeful one, filled with opportunities. This process allows us to expand our view of our reality.
When reframing your perspective it is helpful to consider if your current perspective on the problem has any distorted thinking. Let’s take a look at a few types of distorted thinking that may be hindering you.
- All or nothing thinking
- When thinking in all-or-nothing terms, you split your views into extremes. Everything—from your view of yourself to your life experiences—is divided into black-or-white terms. This leaves room for little, if any, gray area in between. If you find yourself using words like “always” or “never” you may be falling into this trap.
- An example: I can’t do anything.
- This statement falls into the never category. And most likely, it’s not true.
- A way to reframe this would be: I have chronic illness that limits a lot of things that I can do but there are still things that I can do.
- When taking on all or nothing thinking: recognize your strengths, understand that set backs happen, and look for the positive in a situation.
- Catastrophic thinking assumes that the worst will happen. While the worst does sometimes happen, it doesn’t always happen. But our brains can fall into the trap of believing that the worst case will be the out come for everything that we try to accomplish.
- When you fall into catastrophic thinking, it is important to challenge these thoughts. Ask yourself “How likely is it that this will happen?” or “Do I have evidence that this will happen?” or “What is a more likely outcome?”
- Should statements
- Should statements are a common negative thinking pattern, or cognitive distortion, that can contribute to feelings of fear and worry. They also put unreasonable demands and pressure on ourselves, which can make us feel guilty or like we’ve failed. The trap inherent in should statements is the perfectionism that it imposes upon us. When we say that we should be something other than what we are there is an inherent devaluing of what we actually are. This leads to feelings of shame. Remember that no one is expected to be perfect, including yourself. Begin to be compassionate with yourself, accept your shortcomings, and celebrate your strengths. Give yourself permission to be imperfectly human.
I have another post that talks about distorted thinking, you can check that out over here:
Or you can listen to the pod cast here:
Another way to reframe is simply by reconsidering the words that we use to talk about our situation. If we describe the situation as a “problem” that will shape the way that we think about that situation and how we feel about it. A problem is defined as: a matter or situation regarded as unwelcome or harmful and needing to be dealt with and overcome. Just by choosing to describe the situation as a “problem” the situation is cast with a negative shadow and feelings of anger, dread or sadness are likely to follow. But what happens if we choose to use the word “challenge” to reference the situation we are currently facing? A challenge is a call to take part in a contest or competition. There is nothing inherently negative programed into the word. It acknowledges that the situation is difficult, but removes the emotional bias. If the word challenge is used, we now have the choice in how we will emotionally respond to the situation. Challenges can be interesting or exciting.
When we consider situations a challenge it becomes something to fight back against, an affront that elicits a competitive response from you. You might say “I’m going to beat this, I’m not going to let this adversity win!” This engages our problem solving brain and shifts us into solution oriented thinking. When we think of situations as challenges, it also allows us to consider the possibility of learning or an opportunity to grow from a difficult experience.
There is also the option of reframing how we are considering the problem in time. Usually, we consider our problems in the very immediate, now sense of things. We can reframe by reconsidering them in the long term context. One way of reframing with the context of time is to ask ourselves “When I look back on this moment a year from now, how will I have wanted to respond?” This is basically asking ourselves who we desire to be and what types of behaviors we value. But you can also reframe a problem in the context of time but reminding yourself of impermanence. Nothing lasts forever. Whatever the current problem is won’t either. Is it something that you can simply wait out?
In truth, reframing has endless possibilities. The point is just to try to look at things from a different perspective than you have been so that you can gain different insight. None of these methods for reframing will work all the time. But they are good resources to have available to you when things are getting difficult.
Giving Emotions Space
Give your emotions space. Right. So, what does that even mean? Giving your emotions space means allowing yourself to feel whatever you are feeling without making an effort to change those feelings. The first step in being able to do this is challenging the idea that there are “good” and “bad” feelings. Strip away the value judgements and instead consider what is generating the feeling. While sitting with our emotions can be uncomfortable work, it is important to hold onto the reality that feelings cannot harm you. Being angry doesn’t hurt you. How you behave in response to your feelings can be harmful or helpful, but the feeling itself is just a thing that is happening. Having undesired feelings is part of being human. Generally speaking, people don’t want to feel sad or angry or jaded or anxious or any of the other uncomfortable, negatively viewed emotions. But the truth is that these feelings are a normal and healthy part of being human.
When you have a chronic illness a lot of things are happening to you. Your body is changing in undesirable ways. Your self image is challenged. The future you’ve been imagining now requires revision. It makes sense that you will feel things like anger or envy or fear or sadness. Having these feelings in response to your illness is a normal response to a difficult situation. Give yourself permission to be human and allow yourself to feel what ever you are feeling in the moment. Consider what that emotion is telling you about the situation.
The truth about emotions is that they don’t just go away if we ignore them. When we stuff them down or push them aside, they will just pop up in unexpected ways. They will present as the being short tempered with our loved ones. They will creep in through insomnia or nightmares. The only way to process your feelings is to sit with them and move through them. This can be difficult to do, especially if you are not even sure what it is that you are feeling. Don’t be afraid to ask for help. This can be just talking to a friend about things or it can mean going to a professional. Either way, talking about how we are feeling can be helpful.
There is a great deal of power just in the naming of a feeling. Once you name something, you have gained a level of understanding of that thing and a sense of perspective. When you’re standing in an emotional storm, seek to identify and name the feelings that you’re having. Not in a judgmental way, but more out of quiet detachment – “Oh, this is loneliness.” You don’t have to do anything with the feeling. Just recognizing it helps you to see it as a separate entity and it promotes a greater sense of control.
Holding space is a powerful relationship skill for many reasons:
- Emotional space enables you to be emotionally present.
- It makes all the difference between reacting and responding.
- It makes self-compassion possible.
- It makes intimate connection with another possible.
Even though we are feeling these things, we are not these things. And just because we experience these feelings, it does not mean that they are true. When big life stuff happens, we often identify with it. Allow it to curl up and nestle in our hearts like a cat by a hearth. We become that thing that happened. The betrayed. The abandoned. The lost. By giving our emotions space, we give ourselves the chance to choose the way that we want to identify with the emotions that we are having.
This is a topic that I frequently visit. Because of that I’ll only touch on it briefly here. All humans suffer. It is an inherent part of the human condition. Processing our suffering is the act of grieving. When you have chronic illness it is important to recognize that your grieving is an ongoing process that will last your life time. Every time that you experience a decline in your status, you will grieve. Whenever you are reminded of the future that you once imagined, you will grieve. Thinking about the person that you used to be can also produce grieving. This is normal. Let the tides of grief come in and tread their waters while reminding yourself that the tide will recede again.
Having a Flare Bag
No matter how good your treatment plan, having chronic illness means there will be times that your symptoms flare. Keep note of what things help you feel better during a flare. Gather those resources together into one place that is easy for you to access. A bag is often the most useful way of collecting these resources. Having a flare bag means that you now have all your management tools available too you without spending spoons on it. Since brain fog can make problem solving difficult, having a flare bag can also serve as a reminder of what things might be helpful during your flare.
Having social support makes a huge difference when you are struggling. This comes in many ways: doctors, therapists, friends, family, support groups or online communities. There is no such thing as having too much social support.
Make sure that you have a medical team that you trust and that is supportive. Each member of that team needs to be filling a role towards improving your quality of life. If they aren’t helping you, they don’t belong on your medical team. Don’t hesitate to fire a health care provider that isn’t effective or isn’t willing to work towards the goals you value or isn’t someone you trust.
Support groups and online communities are a great resource for finding others who have shared experiences. There is something powerful in simply feeling that another person understands you and your experience. Someone who doesn’t have the same illness as you will have a more difficult time relating to your chronic illness experiences. Seek out others who share your diagnosis.
Your friends and family can be your best allies or your worst enemies. It is very important to evaluate the relationships you have in your life. There is nothing wrong with ending relationships with people that are causing you harm. This doesn’t mean they are bad people or that you don’t care about them. It only means that with their given situation and your given situation the two of you are not currently compatible and helpful to be connected. Sometimes these means removing people from your life completely and other times it means redrawing boundaries.
The nature of chronic illness demands that we spend a good amount of our time in problem solving mode. We experience symptoms and devise ways to make those symptoms easier to tolerate. We can’t do something so we come up with ways to work around that. This is effective and important. But it’s also important to keep in mind that problem solving is inherently focused on problems. When you’re in this mode of thinking, you’re focusing on the things that are not working, that are causing suffering or are broken. It focuses on the negative aspects of life, the things that you want to change and improve upon.
Gratitude work is about reminding ourselves of the good things in our lives, because when we are focused on problem solving it can be easy to begin to think that there is nothing good or going right in life. Setting aside time for gratitude work is a way to challenge this idea.
When you have chronic illness it can be easy to over look the importance of maintaining our spiritual health. This needs looks different for everyone, but is a universal need. Spirituality is about the consideration of the self in context of the greater universe. This can be a religious experience but it doesn’t have to be. Even atheist have spiritual needs. The fact that they have declared themselves an atheist means that they have spent time considering the big life questions. While attending to our physical and psychological needs is important, we cannot neglect the spiritual needs either. Holistic self care that attends to all three areas of needs will result in the best outcomes. So be sure to attend church or meditate or pray. Give yourself time to contemplate the big questions like “What is the meaning of life?” and “What is my place in the universe?”
Part of spiritual work is facing and accepting our mortality. When you have chronic illness you often become more aware of your mortality. Avoiding the reality of our inevitable deaths is a source of anxiety and fear. When you spend the time to do the spiritual work needed, you can find peace and acceptance with your mortality. This acceptance can make facing the symptoms and declines that come with chronic illness a little easier. Spirituality offers us a frame work to consider death.
That’s All, for now…
Thanks for coming and hanging out with me today. I appreciate you spending your time. The second part of this should be posting of Friday. Until then, you take care of yourselves.