Normal, the norm...Whats that? What's My Normal?

Normal, the norm...Whats that? What's My Normal?

When living with chronic pain or chronic illness long enough, at times some people can start to believe that their discomfort is normal, until a moment comes and they are reminded that in fact it is not. Many people who live with chronic pain and illness may quickly understand what I am referring to... those moments when you look around and realize that nobody else in the room is experiencing the pain that you are. This may feel obvious to some; however, pain and discomfort may have become the new normal for many people living with pain. It is always or usually there, and some people may have even forgotten what it is like to live without it.

Just Sitting ...

Sitting... There are so many associations that come to mind when thinking of the word sitting. I visualize sitting on a park bench enjoying the peaceful moments of spring. I think about the relief of sitting down after a long day's work. Sitting can also be an act of boredom or complete laziness, as one plops on his/her couch and watches countless hours of mindless TV. But for people who live with chronic physical illnesses, sitting may carry additional associations.

Imagine feeling a heaviness in your body so powerful that you cannot move. Sitting loses its appeal and is no longer perceived as a great pleasure but rather as the outcome of being held hostage by your physical limitations. One sits because one literally cannot move because of paralysis or incapacitation. One sits because it hurts too much to stand or walk. One sits because the fatigue is so unbearable that there is no energy to do anything but sit. One sits because of a fear that s/he will faint or have a seizure and will fall. The associations for sitting when living with a chronic physical illness goes on.

I also associate sitting with meditation. One sits quietly and focuses on breathing or on a mental image or remains simply in stillness. There is much discomfort that can arise while meditating. One's back begins to ache, one's arm may get itchy, one may feel the impulse to shift or squirm. Of even more discomfort can be the thoughts, feelings, or sensations that arise when attempting to quiet the mind and body. It is not an easy thing to sit and remain still physically and mentally, yet a part of meditation is finding a way to make one's self as comfortable as possible and to then find a way to just be-- be with whatever comes up, acknowledging that it is there and then letting it float away. Not an easy task but certainly a possible task for all.

There is a large amount of research demonstrating that meditation has profound effects on the brain. Meditation may not eliminate one's physical illness but can play a large role in one's coping with living with the illness. It is a method of learning to better tolerate difficult feelings, both mental and physical. I imagine that if one is held hostage by his/her physical illness and has no choice but to sit and sit and sit, it may be quite beneficial to use that time sitting to practice various forms of meditation. It can be challenging at first; maybe even be experienced as adding more uneasiness or difficulty to the day; however, with time it may serve as a very valuable tool.

Who would think that sitting could be so powerful or that there would be so many associations with sitting? All human experience carries a multitude of meaning. One can choose to be as creative or not with what s/he does with each experience. How will you choose to sit?

Getting Rid of the Boogeyman ...

People who live with chronic physical illness are unfortunately often too familiar with the unexpected, unpredictable, and downright frightening. I do not think many get used to the idea that a symptom or a diagnosis may or may not come back after it has gone, or that new symptoms of the illness may emerge at any time. It is almost never easy to remain unaroused when out of the blue one ends up in the emergency room and is told s/he needs surgery, or when someone is told that the only treatment that might work is a treatment that may or may not cause some very disturbing neurological or psychological side effects. As if one's psychological state has not already been affected enough...
The experience of living with the constant fear of "will my condition progress, will my cancer come back, or will this treatment leave me with neurological damage" is similar in many ways to the experience of a frightened child who has been abused and wonders if the abuser will return, or from a survivor of war who wonders whether or not s/he will have to return to the war zone, or from any survivor of trauma who contains the fear of the boogeyman; whatever that boogeyman may be for each individual.

Does that boogeyman always return? How many faces does the boogeyman have? Is the boogeyman the lump one finds that makes one wonder if the cancer has returned? Is the boogeyman the fatigue ones feels that leads one to wonder if a autoimmune flare is on its way? Is the boogeyman the news from one's doctor that an organ must be removed? How can these all be the boogeyman if there are so many different faces? The common experience of all these examples is fear of a negative potential, the feeling that doom is always lurking around the corner--this is the boogeyman. That awful boogeyman fear who steals your moments, your space for joy and immersion in the present. It is that horrible fear of what could possibly happen in the future (based on actual awful past experiences of course) that places a dark cloud over the present moment. The boogeyman shows people mirrors of the past and distorted fun house mirrors of the future, tricking people into believing there is no present and there is no goodness. And yes, sometimes the present is pretty terrible and maybe the future will be, but sometimes one does not really know. Sometimes because of that fear, that presupposition of doom, one is prevented from really examining the right now and may miss out on some very beautiful things.

One may wonder how in the world can that boogeyman fear be destroyed once and for all? The fear may not necessarily go away forever but there are many things that one can do to strongly defend oneself. Like with survivors of all types of trauma, things that remind one of the trauma are likely to invoke a feeling or fear or even flashbacks of the trauma or even a somatic reexperiencing of the trauma. Given that being diagnosed with a chronic illness is a traumatic experience that involves bodily change, there is no way to avoid some of the traumatic triggers, as by virtue of just being human our bodies do strange things sometimes. Many times, even when living with an illness, these bodily functions (e.g. stomach ache, cough, etc.) are just passing things; however, for a person living with a chronic illness they can trigger the feeling of doom--the boogeyman fear. This does not mean that the boogeyman fear cannot be managed. It is very important to take each moment, one step at a time. For example, if you feel the fear cropping up and you start to find yourself fast forwarding into the future, stop yourself for a minute and take stock of what actually is real in that moment. OK you feel fatigued but how do you know that means you will have a full flare? You don't. What do you know in that specific moment? Is there something positive around you in that moment? Are you spending time with your best friend? Are you not enjoying that moment with your best friend because you are worrying about fatigue that may pass after a nap? Are you going to let that boogeyman steal your moment or even steal your life? The fear can be crippling but with the right support you can send the boogeyman back to the dark cave where he came from. If the boogeyman is quite strong, you just might need a bit more muscle...get help! I cannot stress enough that being diagnosed with a chronic illness is a trauma like any other and requires a strong support system whether it be psychotherapy or a support group. You don't have to fight alone. There are many ways that psychotherapy can help heal the wounds of fear, even while still battling the physical illness itself at the same time. Fear does not have to win.

I would like to share a story of inspiration. This is a story of a courageous woman who found her own way to tell the fear to take a hike! She found a way to literally crush some frustrations, found a way to find joy and belongingness, and created meaning out of something very traumatic. This brave and inspirational woman had a lung removed surgically because of mesotheleoma seven years ago. On the anniversary of her surgery she takes part in Lungleavin Day a celebration she herself created. This is a day to overcome fear, where fears are written on plates and then tossed into a fire. Anyone can participate in the event which takes place on Feb 2nd and will also be webcasting live. If you'd like to participate or learn more information about Lungleavin Day check out:


What Perspective are you Viewing it From?

Happy 2012!!! Welcome to a new cycle, a new year, and a new opportunity to let go of the past and prepare for change. Whether 2011 was great, good, ok, not so great, or simply very difficult and tough, there is something common in everyone's 2011--it has passed. Everything passes and there is always something to look forward to, even if what is coming may be more challenging than what has come to pass. For people living with chronic physical illness, 2011 may have been a time of adjustment, of pain, of suffering, or of remission. What will 2012 bring? There is no way to really know. The only thing that can be controlled in the immediate present is how one copes in the moment--what perspective one takes.

Perspective! Why would perspective be an important factor? How can perspective or perception of the past, present, and future impact one's health? Lets take two hypothetical scenarios. In one case, a person who lives with physical illness had a very difficult 2011. This person experiences the immediate present as no different from the past or the future and expects 2012 to be just as hard. Another person who also had a tiring 2011, believes that 2012 will be much better. Some may assume that the second scenario is the healthier of the two; however, these two scenarios are not so different from each other. Both of these people are basing their expectations of the future on their past experiences (i.e. the past was bad therefore the future will be as well or the past was bad so the future must be better). However, there is really no way to know, unless time is a prognostic factor in one's particular illness.

In both of the above scenarios, the people living with the chronic illness are depending on change in something external (e.g. the illness symptoms will be better or a new medication will help),as if they themselves are passive. Sometimes when a trauma occurs, such as being diagnosed with a chronic illness, people can feel passive or helpless, as if there is no control over one's life, and as if things just happen to them. Considering the role of perception and perspective, taking an active and internal approach influences one's focus to one of the present. Questions that arise are, "how will I cope with my uncomfortable symptoms right now?" or "I feel great, what will I do right now?" This perception allows one to accept the past as something that occurred and view the future as something that will be dealt with when it comes, and most importantly experience the now as a moment for active choices to be made. "How can I feel the best about myself right now and what decisions that I make right now will impact my health for the best in the long run? Right now I choose to eat a healthy diet. I feel great about myself for doing something nice for myself right now." There is no need to focus on your ability to maintain the healthy behavior in the future, since if you focus on maintaining the behavior in the moment it is much easier to do it and you will see that you can. Just this moment! Just for now! Say it over and over again.

2012 will bring with it many uncontrollable events; however, how one deals with those events is controllable. Deal with each struggle or even each joy as it comes. You do not have to worry about how you will cope forever, but rather stay with the how you will cope right now. Happy 2012!

Double Illness Double Trouble

Living with a chronic physical illness can involve frequent periods of muscle pain, joint pain, nausea, dizziness, fatigue, confusion, memory loss, weakness, among other symptoms. Some people who live with chronic illness experience one or more of these symptoms on a daily basis. It may be difficult to fathom how any person can cope with such a situation; however, human resiliency can be most surprising! Thinking of living with a chronic physical illness can seem so daunting that it makes little sense to think about what people living with chronic physical illness go through when they get sick with everyday illnesses, such as the common cold, flu, bronchitis, or sinus infection. However, the experience of double illness can mean double trouble for those living with chronic illness, in a variety of ways.

People vary in terms of how long it takes them to adjust to the particular chronic illness that they live with. Some symptoms can seem unbearable for months and years, but at some point many people learn to integrate their symptoms into their daily life. For example, pain may become part of one's becomes familiar. The predictability of the symptom may on some level even become comforting as it can be something that is understood, identified, and labeled. "Oh there goes my hair falling again. Must be X pill causing that like last time," Or "Darn my skin has itchy blots. I should have stayed out of that sun." This predictability does not in any way minimize the trauma and unfairness of having to live with these symptoms. Nobody should have to experience chronic illness. The intention is to illustrate that because living with chronic physical illness comes with so much uncertainty and unpredictability, a great need for understanding and predictability is usually present. Now imagine that a person who lives with a chronic illness wakes up one day and feels some random sensation in his or her chest. This can be extremely frightening. It is not one of the everyday, identified, and labeled symptoms that have become integrated into the person's daily life.

Until an explanation is provided, the person may become frightened that something is seriously wrong. Even after the reason for the new symptom is identified, for example the strange sensation in the chest being the result of bronchitis, which can easily be treated, the person may travel through an ocean of emotions. The person may start having generalized depressive thoughts such as, "everything bad always happens to me. I always get sick." The person may also blame and become extremely critical of him or herself, believing that an unrealistic kind of extra care must be taken since he or she already has an illness. The person's chronic illness symptoms, depending on the illness, may also become intensified, thrusting the person out of their integrated and somewhat controlled state of being, forcing him or her to deal with the feelings of uncertainty that comes with living with chronic physical illness.

Think about what it feels like to have the flu and to be bed-ridden for days or to have to get through a day with a pounding sinus headache...while NOT living with a chronic illness. Now imagine having to live with a chronic illness. Its easy to question, "why would anyone living with a chronic illness care about catching a cold when they have so much more to deal with?" Well that's just it--there is already so much to deal with. Being diagnosed with a chronic illness is traumatic in it of itself and every time another unpredictable sign of sickness reappears a possibility for retraumatization is presented in a variety ways,as described above. The process of accepting one's illness and symptoms is not an easy one. Nobody wants to relive that process every time they get sick.

The Undying Memory

Young people who live with chronic illness may often be concerned about how their peers are going to perceive them. They may also become very anxious when they have an active episode of their illness,as it may activate memories of when an active episode of their illness was associated with some traumatic social experience. It is not easy for an adolescent to have to miss days or even weeks of school at a time because of their illness. When returning to school this adolescent might have to answer many questions about why she or he was out for so long, and at times this can be uncomfortable. Other times, depending on the illness, the adolescent may return to school with some visible marker of having had an episode of the illness, such as an oxygen tank, crutches, a cast, scars, hair loss, weight loss or gain, among others. Oftentimes, the adolescent may experience great social support upon his or her return to school. Peers may express concern for the person or happiness that the person is healthy enough to be back in class. Sometimes the return to school does not go well and people may stare, make insensitive or inappropriate comments, or isolate the adolescent who already has a lot to cope with.

If the experience of being seen again by peers post active episode was extremely unpleasant, this experience may become stuck in the person's memory and may serve as a template for how the person expects future encounters with peers post active episode to go. This undying memory of the unpleasant experience can cause a lot of anxiety for the person, even if there is nothing to suggest that the situation will be the same as before. For example, a person in college may have not had an active episode since middle school. This person had a horrible experience when he or she returned to class during middle school. This same person now in college has an entirely different set of friends, additional skills for coping with his or her illness, and practice explaining what his or her illness is for when people will ask. However, the act of returning to school, college or not, may activate that memory of what it was like in middle school and may create a lot of anxiety and fear. The person may feel isolated from connecting with peers or different because of the physical illness. The person may be tired of explaining what the illness is, or if physical signs are present, the person may suddenly become increasingly sensitive to stares or may feel unattractive. This at times can be enough to make a person want to avoid facing his or her peers all together.

This is an enormous challenge for young people living with chronic illness. Avoiding the situation may be the knee-jerk reaction for coping. If one takes a minute to think about it, avoidance is not fair to the person who is living with the illness. Why should anyone miss out on all the things his or her peers get to experience? Some people with chronic physical illness may already have to skip certain activities or events that their peers do not. Why short change oneself? It takes a lot of courage to stare that old memory in the face with pride and walk past it in an effort to make new memories. People may ask, "Why were you out of school for so long?" or "What is that illness you have? What does it mean?" Nobody is perfect and everyone is different in some way. Perhaps by answering peers' questions one may be educating his or her peers. Peers might just be asking out of curiosity, rather than with the intention to make one uncomfortable.

Imagine what it would be like for the adolescent living with the chronic illness to have accepted the illness him or herself. If the person has come to accept him or herself, likely the peers will too. Remember, a lot of the anxiety and fear is coming from one's own memory, within one's self, rather than from the present or the current peers. There are always opportunities to make new memories. If for some reason the current peers react in a similar way to the peers in the memory, one may want to think about why that is. Perhaps it is simply out of ignorance. The peers might not understand the illness and may need further explanation, or they might just need some time to get used to being around someone who lives with the particular illness. If for some awful reason the peers absolutely cannot accept the person living with the illness, one can still change the experience so that it does not become a repetition of the memory. If the peers do not change, the way that the person living with the illness reacts to the situation can.

It all comes back to self-acceptance. Everyone wants to be accepted by others, but if a certain group cannot embrace you, as long as you accept yourself, you will find people who will too. The undying memory is only powerful so long as you keep it strong with avoidance of self-acceptance and avoidance of new experiences. Although some memories may remain immortal, if you take control and walk through the fear and anxiety, these memories can become distant specks in a rich life full of pleasant experiences.

Pain's Life? No My Life!

Doctors can objectively measure blood pressure, heart rate, change in the number of antibodies or cells, and many other indicators of health and illness. How can pain be measured? Health professionals can ask people how much they hurt on a scale of 1 to 10 and monitor subjective changes in pain, or they can simply ask one to describe how he or she feels, but pain cannot be objectively rated. Sometimes when a person is in extreme pain, physical changes can occur, such as changes in heart rate; however, the level of pain that may lead to bodily changes in one person can be higher or lower than the level that will result in the same changes in another person. We all have different levels of pain tolerance.

Pain is a complicated phenomena; the experience varying from person to person and influenced by sociocultural norms, gender, age, mood, levels of stress, and one's ability to cope with the pain, as well as other factors. All people at some time in their lives experience pain, but many people who live with chronic physical illness have to manage pain much more often than those who do not. Having to manage pain on a daily, weekly, or even monthly basis can be frustrating, exhausting, and can take a huge toll on one's psychological well being. It is easy to feel depressed and defeated, and to sometimes become preoccupied with the pain as if it has taken over your life. Is it possible for you to take over the pain and to control your life?

When many moments are spent wondering when the pain will stop, little time remains for living and enjoying. Shifting focus from the pain to something interesting and pleasurable enough to make you want to be thankful for your life...even for a life with suffering is more than possible. Buddhist monk Pema Chodron writes, "If we're willing to give up hope that insecurity and pain can be exterminated, then we can have the courage to relax with the groundlessness of our situation" (Chodron, 2005, p. 46). Surprisingly, if one stops thinking about when the pain will end and allows space for thinking about something else, the pain will end for that time. This is how meditation works. People can train their mind to focus on whatever they want it to focus on, while relaxing in the experience that they are in in the moment--even a painful one. This is one of the reasons why pain tolerance varies from person to person. And if someone is paying attention to something that he or she enjoys it will likely affect his or her mood, and in effect mood also influences pain levels. When a person is happy at a given moment, he or she is likely to experience less pain than if the same person is unhappy in that same situation. It is a chain reaction.

All that said, this is not an easy process. Although it is difficult to measure pain objectively, physical pain is real and it hurts. It takes a lot of courage and strength to stand up to pain, and this process itself can be painful. Pain can be very powerful but do not forget that you are even more powerful. This is one of the reasons why pain tolerance varies between different people...because people can control the pain. You choose how to spend your time--your life. It is your life, not the pain's!

Chodron, P. (2005). When things fall apart: Heart advice for difficult times. Boston: Shambala.