Chronic Illness and Mental Health Part 1: The Unpredictability of Chronic Illness
Living with a chronic illness can be overwhelming, both physically and emotionally. You may deal with varying degrees of disability; from brain fog that affects your ability to concentrate and remember, to intense pain that affects your joints and ability to move freely in your body. You may even have “wandering” symptoms, which means that you experience different symptoms from day-to-day or week-to-week, and are never sure what to expect from your body. Sometimes symptoms might even be vague and hard to describe; even though you know something is off in your body, you are not experiencing the vitality you once did.
Listen to the audio version of this article on Soundcloud or YouTube.
When your body is in pain or compromised in some way, it can be physically draining. Your immune system may be working hard to try to keep up, and physical exhaustion, or just plain feeling sluggish, is a common experience. After a while, this tends to take an emotional toll.
I don’t know about you, but after a few days of having a bad cold or the flu, I feel emotionally vulnerable and start to wonder if I’m feeling depressed. This is because when we are sick, our bodies adopt the posture and functioning of someone whose mental health is compromised. You may hunch over, need to rest in bed often, find daily tasks more difficult, or find yourself zoning out and unable to focus. When these types of sickness symptoms happen, our brain, which picks up a lot of information from our body, thinks we are depressed, anxious, or in some way emotionally unhappy. It can become a struggle to maintain a balanced mood when your body is working against it.
If this is you, don’t despair; there is help for those living with chronic illness, and improving your quality of life is within reach. First, we will look at reasons chronic illness is difficult to cope with – the more you understand, the better equipped you are to handle the problem. Then, we will jump into coping strategies to increase your sense of well-being and quality of life.
If you suffer from an illness that causes your symptoms to change and rotate, you are no stranger to unpredictability. There is nothing more frustrating than not knowing how you will physically feel when you wake up in the morning: not knowing how this will affect your ability to engage during the day ahead.
For example, some people experience joint or muscle pain that comes and goes in varying intensities. On some days, they are able to walk and hike, but on others, walking from the parking lot to a restaurant is painful, and this affects their ability to make plans with friends and loved ones. Imagine hearing of a concert you would love to attend, and then not knowing whether you will be able to walk to your seat or stand and enjoy the music.
The unpredictability of symptoms makes it nearly impossible to plan ahead. Your social life may suffer, and relationships can take a toll if you repeatedly cancel plans at the last minute because of unforeseen physical symptoms. Even clothing can be a problem for some. Clothes can fit one week, and then become tight and pinching the next, due to swelling and bloating, or they can become loose and hanging because of unwanted weight loss.
You may have to continually ask yourself questions that healthy people do not give a second thought:
- Will walking or standing be so painful that you must think ahead to make sure you can park close enough wherever you travel?
- Are you able to fit into and wear comfortable clothes, or will finding something that fits be an added task and stressor?
- Will you be able to focus at work and engage in a meeting, or forget what you wanted to contribute and not be able to participate articulately?
- Are you tired and counting the hours until you can rest again?
Being unable to predict how your body will feel or function from day-to-day adds the unwanted burden of thinking through everything you do. When you feel well, you take for granted all the tasks and situations that are automated. It’s like moving to a strange home and having to learn where everything is. Instead of getting up and starting your day, you must think about where the toothbrush and toothpaste are, where you put your morning coffee mug, where to sit and settle in for breakfast instead of already having a favorite seat, etc. Every decision requires thought, and although each decision is not taxing on its own, when you put them all together, it is exhausting! This is similar to what unpredictability of symptoms from a chronic illness can feel like, day after day.
HOW TO COPE
When loved ones you care about are in pain, your natural desire is to soften. You talk in soothing tones, try to be helpful, maybe put a gentle hand on their shoulder, or offer a hug. You instinctively understand that being caring is what is needed when someone is struggling. However, most of us often don’t apply this same understanding to ourselves.
When you are having a tough time, do you respond by telling yourself to “buck up” and “push through”, not wanting to ask for help, while berating yourself for having a challenging time in the first place? If so, you are not alone. Self-criticism is rampant in our world, and this is unfortunate because not only does this make pain more difficult to tolerate, it also often slows our progress and prevents clear problem solving.
If you’d like to understand this better, try this little exercise: Take out a pen and paper and write down some of the things that you say to yourself when you are not being kind.
My favorites: “You are so stupid!” “Geez, you can’t do anything. What a failure.” “You are so ugly; you should be ashamed. Just look at you.”
Without censoring, write down those phrases you use to tell yourself you are unworthy and undeserving of love and respect.
Now, close your eyes and imagine a chair in front of you. Imagine someone you love dearly just came and sat down in this chair. Try to picture this person vividly, and feel the sense of love and gratitude you have for this person well up inside of you. Now, tell the person the phrases you use to berate yourself but direct the words toward your loved one. If you tell yourself you are a failure, say to your loved one that he or she is a failure. Use the tone and emphasis you use toward yourself and don’t hold back. Imagine your loved one receiving your words and watch their reaction. What happens? How do they feel? How do you feel?
I tried this exercise in a workshop once, and I couldn’t get past the first few words. In my imagination, my loved one started crying, hunched over and horrified by the hurtful words I hurled toward him. I couldn’t even go on. Now, imagine, this is what you have been doing to yourself.
When illness happens, you are compromised. You cannot function at 100% and perform as you do when you are feeling healthy. When you are in this state, you need compassion more than ever: It does not make sense to kick yourself when you are down. That only puts you in more pain, and you feel greater defeat and inability to cope.
Replacing self-criticism with a compassionate gesture or words can soften the blow, allow you to release the pressure valve, and help you gain the strength and confidence to cope.
Imagine not being able to concentrate or perform as well as you would like and rather than saying the words you identified above, instead, you place a soft hand over your heart, or gently hold your other hand, and say something sweet, such as, “Oh sweetheart, I’m so sorry you’re suffering in this moment.” Sound awkward? That’s a sign you need some practice!
Dr. Kristen Neff developed Mindful Self Compassion, a set of skills to practice changing your harsh self-stance to one of love, gentleness, understanding, and of course, compassion. On her website, she generously provides guided meditations and suggested practices. If you would like to learn more, check out her offerings and start gently practicing. https://self-compassion.org/ Also, listen to my guided meditation on feeling supported and connected at the end of this article.
CLEAR, UNAPOLOGETIC COMMUNICATION
When you are compromised by illness, it is a common experience to feel shame. Embarrassment that you are not functioning as you previously did, or as you or others expect, can get in the way of asking for help or being clear about your abilities and limits.
I have a friend who, unbeknownst to me, was suffering from a severe autoimmune disorder. For a while, I experienced her as rigid, demanding, and defensive, and did not want to spend much time around her as a result. When she finally (and tearfully) told me she was sick and suffering and was acting differently because she was embarrassed and did not want to ask for help, all of my irritation and intolerance melted and I was filled with compassion for her. Instead of wanting to check out of the relationship, her communication made me want to know more, be more understanding, and offer any help I could.
When my friend clearly and directly communicated with me what was going on with her health, how it was affecting her, and what she needed, I was no longer in the dark. I was now provided with context if she canceled plans last minute or needed to rest instead of going on a hike.
Being candid about what you want and need, without apologizing for yourself, and simply stating how things are, can be empowering. If you can put aside the judgments of how you think you “should” feel or what you “should” be doing, and instead respond to the facts of the situation and what you need and want, everybody is happier, including you.
If you are embarrassed or feel shame because you are sick and you respond by hiding (the action urge for shame and embarrassment), you are reinforcing the message that you should be ashamed of yourself. When you are sick, and you feel embarrassed, but then you ask for help anyway, set limits, or let people know what you are struggling with, you give yourself the message that you deserve to be cared for, acknowledged, and that this sickness is not your fault.
When you are coping with chronic illness, communication can prove difficult, especially if symptoms wax and wane in an unpredictable fashion. Because of this, you may not know how to describe how you feel, what to ask for, or what limits to set. In this case, just stating that you are unsure what is going on with you or what to ask for can be clarifying to your loved ones and validating to yourself. The clearer you can be about your current experience, without judgment, the better able you will be to set appropriate limits and gain support, connection, and understanding.
Guided Mindfulness Practice for Finding Connection and Support
Listen to the audio version of this practice on Soundcloud or YouTube.
(Modified from DBT Skills Training Handouts and Worksheets, Second Edition, by Marsha M. Linehan.)
An effective way to participate in this meditation is not to get too caught up in thinking about the words. Rather, settle into your breath, your body, and let the words gently float through you, allowing yourself to be just as you are in this moment.
Start by noticing your breath in your body. You do not have to alter or change your breathing. Your breath is perfect as it is. Just notice the feeling of your inhalation and exhalation and how your whole body is involved in this movement of breath.
Focus your attention on your feet touching the ground. Consider the kindness of the ground holding you up, providing a path for you to get to other things, not letting you fall away from everything else.
Focus your attention on your body touching the chair you sit in. Consider how the chair accepts you totally, holds you up, supports your back, and keeps you from falling onto the floor.
Focus your attention on the clothes on your body. Consider the touch of your clothes holding you, surrounding and keeping you warm and comfortable.
If you are indoors, consider the walls in the room. They keep out the wind and the cold and the rain. Think of how the walls are connected to you through the floor and the air in the room. Experience your connection to the walls that provide you with a secure place to do things.
Now, focus your attention on where your body touches an object: floor or ground, air molecules, a chair or armrest, your clothes, you choose. Try to see all the ways you are connected to and accepted by that object. Consider the function of that object in relation to you. That is, consider what the object does for you. Consider its kindness in doing that. Experience the sensation of touching the object, and focus your entire attention on that kindness and notice if you begin to feel a sense of being connected, loved, or cared for arising in your heart.
Continue to notice objects you are connected to and supported by throughout your day. Whenever you are needing a bit more support and comfort, see if you can identify ways that objects around you are kindly providing their support. Breathe this support in and feel connected to the world around you.