Chronic illness without suffering, Part 1: Meeting your body
I’ve been battling chronic health issues since I was 12. In the sixth grade I started having horrible digestive issues that wouldn’t be resolved until my sophomore year in college with the discovery of numerous food allergies. This coincided with my contracting Lyme disease and a 16-year journey to get a diagnosis to explain my bizarre and worsening symptoms. For the most part, I can’t remember a time when I wasn’t struggling in some way to make it through the day.
Consequently, I’ve had a lot of practice “functioning” as a person while feeling terrible. People are frequently amazed when they hear this, as my mannerisms and composure never seemed to betray what was going on underneath the surface. Even today, as I’m in the hardest part of treatment for Lyme disease and frequently barely strong enough to travel far from bed, people remark that I seem to have the right attitude.
I tell them that I’m not suffering — I’ve just been dealt a shitty situation that I’m feeling my way through. I need to remind people that I’m not depressed despite my situation. I’ve accepted what’s going on in my body and most days my inner-life is quite peaceful and contemplative. I’m convinced this is a space that anyone can get to, it just takes looking at things a little bit differently.
You are not your body
My journey towards inner peace started with the revelation that I’m not my body. In Western culture, this is a unique idea as we are so grounded in the material world that it’s hard to picture ourselves outside of our bodies. We look into the mirror and say, “that’s me.” We identify so strongly with our bodies that we angst over what happens to it, how it appears, and how it changes as we age.
But you are not your body. A weak body does not mean you are weak. Physical fragility speaks nothing about you, the person you refer to as “I.” The real you is not physical, and so the real you exists in the body similar to a driver in a car. From the outside, it all looks the same; it’s only on the inside where something different can be seen.
Having a relationship with your body
Realizing that the “I” is separate from the body allows you to have a relationship with it. You can have a relationship with anything that is not “I” and the most important relationship is with the body. Becoming aware of this relationship is simple: just notice the communication that happens between the “I” and the body.
When you get hungry, there’s a rumbling in your stomach. That’s your body communicating to you that it needs food to continue functioning. You might be in the middle of a meeting or important work, and therefore may not be able to stop and eat. You subconsciously (or even consciously) say, “okay, I’ll stop to eat in 20 minutes.” There are many of these back-and-forth conversations that happen during your waking hours that you’ve probably never noticed.
The first step to having a relationship with your body is to pay attention to how it communicates to you and how you communicate to it. The body’s main forms of communication are physical sensations and emotions, all of which are intended to tell you something (like lights on a dashboard). With chronic illness, the dashboard is lighting up all the time, and that can be overwhelming. Just understand that this is the body reaching out to help you understand what’s going.
Interpreting the body
The body’s communications can be pleasant, like the feeling of joy, or unpleasant, such as pain. It’s important to understand that the body is loving and protective of you, and nothing it does is intended to cause suffering or harm. Pain and discomfort is the body’s way of telling you, “pay attention to this!”
Everyday we are flooded with sensations from the body but rarely do we pay too close attention in our busy lives. The chronically ill, in particular, are constantly receiving unpleasant messages from the body. This hurts. That tingles. This won’t obey. That is weak. We can try to distract ourselves from these messages with TV, work, drugs, or more, but that does nothing to relieve our suffering.
Instead, I’ve grown to look at my illness as a gift: the gift of time to listen to my body. Removed from most societal obligations, we can finally have the opportunity to slow down and really listen to what our bodies are telling us. Once you can understand and interpret the messages from your body, they are no longer scary or overwhelming.
Start by sitting or lying quietly with your eyes closed and paying attention to the most prominent sensation in your body. Is there pain in the body? If so, where is it? What is the quality of the pain? Is it shooting, dull, or burning? Does it radiate out or stay put? Does it cause other sensations around it like tingling? Is it creating heat? If you move little, does it change? Try to describe the sensation as clearly and completely as you possibly can. Paint a picture of the sensation with your words.
Perhaps the sensation is actually an emotion you’re feeling. Pay close attention, is it really just one emotion? It’s far more frequent to feel more than one emotion at a time, so try to determine all of the emotions behind the sensation you’re feeling. If you’re angry, is it because you are hurt or scared? If you’re sad, perhaps you are lonely. Really dig into the emotion and see what you find. Ask yourself what the emotion is telling you. Remember, the emotion is coming from the body and is attempting to communicate to you, the “I”, a message. What is that message?
When you stop and really pay attention to the physical sensations and emotions generated in the body, investigating them and then describing them as completely as possible, they cease to become mysterious goings-on. Try writing down your descriptions so you can refer to them later, as you may find the same clusters of sensations return frequently. It’s very common for physical sensations to lead to emotions (pain leads to fear) and for emotions to lead to physical sensations (that nervous feeling in your stomach). Keeping track of these relationships as they arise can help you make sense of what you’re feeling.
Loving your body
You may have heard the phrase, “love yourself,” many times. This refers to believing that you are a person who is deserving of love, happiness, and good things. Really, this phrase refers to loving the “I” even though we tend to wrap the body into that picture as well. It is important to love the “I” that you are, but as you now know that the body is separate from the “I”, it’s equally important to love your body.
It’s very easy to fall into a bad relationship with your body. I developed the intuition that “I” was separate from my body in middle school, but at that time I had a very unhealthy relationship with my body. I was not providing it with the fuel it needed due to an unhealthy diet. As it was sick, I saw my body as the enemy, the thing that was preventing me from doing what I wanted to do. The body was torturing me, I thought, with pains and other unpleasant sensations designed to make me miserable.
Throughout my teenage years, I would get angry with my body for all the trouble it caused me. It wasn’t fair that others had healthy bodies and could do all the fun things they wanted while I was being held back. “Stupid body,” I would mutter to myself, “what the hell is wrong with you? Stop causing me pain. I hate you. Stop hurting, god dammit!”
The body was my enemy, at least, it was in my mind. I wasn’t skillful enough to see that the discomfort in my body was simply my body telling me that the food I was eating wasn’t good for it. It turned out I was allergic to wheat and gluten, dairy, and soy — all staples of my not-very-healthy diet at the time. Additionally, I rarely ate any vegetables, fruits, or meats, subsisting mostly on carbohydrates. My body was basically screaming at me to change what I was feeding it, but I had no idea. Once I changed my diet, my body rapidly began to heal.
It would take until my mid-20s to reach a better relationship with my body. I was so used to blaming and hating my body for all the discomfort I was put through. I caught myself one day being extremely cruel to my body, saying things like, “why are you so stupid? Why can’t you just let me do this?” For some reason that day, I was shocked by the cruel words I was using to attack my body. If someone else was feeling sick or in pain, would I tell them they were stupid? Absolutely not, so why was I talking to my body in this manner?
In that moment, I decided I would only use positive language to talk to my body from now on. “Damn you, stop this right now,” because, “okay, I’m listening, what are you trying to tell me?” Instead of attacking my body with words, I started using my words to soothe and comfort. On bad days, instead of blaming, I’d quietly say to my body, “I know you’re having a rough day, thank you for being so strong.” If I knew I needed to get through something, I’d explain to my body how I would care for it afterwards. “I know you want to rest, but I really need to get groceries so we can eat. So I’m just going to go to the store very quickly, then we’ll come back and eat, and then I promise we can relax for the rest of the day.”
I came to think of my body as a baby in my care. Parents often struggle initially to understand their child’s noises and needs. Babies are communicating constantly, just not with words. The body is the same way, and just like new parents, it can be a struggle at first to understand what the body is trying to tell you. Be patient, as you would with a baby. Develop that sort of caring relationship with your body, that even if it’s screaming and throwing a fit, you will be there to comfort it and help it feel better.
In my most uncomfortable moments, I tend to whisper (sometimes in my mind, sometimes out loud), “I’m trying to understand what you’re telling me, I really am. We are going to get through this together. I love you and we’re going to figure this out.”
When you begin to talk to your body using soothing, caring words, you might even find that it starts to respond to you directly. I frequently ask my body questions and wait for responses. I find that my body will often reward me with a pleasant feeling if it likes the suggestion or an unpleasant one if it doesn’t. “Do you feel pizza?” My stomach tightens. That’s a no. “Would you like soup?” My body feels lighter; that’s a yes. You may have experienced similar sensations as your “gut feeling” about something.
Observing the body
Once you have accepted that your body is separate from you, and you’ve established a loving communication with it, you are in a good place to start actively observing the body. None of the physical sensations or emotions generated by the body are bad. We tend to label unpleasant ones as bad and pleasant ones as good, but in truth, all sensations are just what they are. They are neither good nor bad, they simple are.
When a baby is crying, you may label that as bad because it causes you discomfort. The same is true with pain and other uncomfortable sensations in the body. Yet, if the baby is crying because it’s hungry and you feed it, it’s easy to see that the entire situation wasn’t bad at all — it was simply a nonverbal conversation that led to a satisfactory conclusion.
Of course, sometimes the baby is crying because it’s sick and needs to be taken to the doctor. In that case, you might label the crying as good because the baby was able to alert you to a problem.
It’s easy to get caught up in labeling sensations and emotions as good and bad before really exploring them. As the “I” that is separate from the body, your first step should always be to explore whatever it is that you’re feeling in a nonjudgmental way. Maybe the pain is simply telling you you’re sitting the wrong way, maybe it’s indicative of a more serious problem, but treating every sensation as if it’s a perverse attack on your sanity doesn’t serve any purpose.
As many with Lyme disease experience, I can experience new symptoms frequently. It seems there’s rarely a day where I don’t experience some new discomfort in my body. When that happens, I take a moment to close my eyes, take a deep breath, and explore what my body is telling me. Symptoms are the body’s way of either alerting you to a problem or protecting itself. I describe the sensation as best I can and then ask my body what it needs.
If you can take the position of a caring observer to what is happening in your body, you’ll find the mental weight of the situation is lessened. Treat the discomfort as you would a crying baby. Soothe your body with words and ask what’s going on, like a parent would. Really listen to what your body is saying.
Conclusion
Suffering is really a state of mind more than anything else. The sensations of the body cannot cause suffering on their own, they need to be paired with disturbing thoughts that recycle in our minds to create suffering. Understanding that you are not your body, and fostering a healthy, loving relationship with your body, can greatly relieve the mental stress of a chronic illness.
Chronic illness doesn’t need to mean chronic suffering. Be kind to yourself and your body. You are in this together, and so you are never really alone.
