Words...

Living with a chronic physical illness can oftentimes feel lonely. People may feel not understood, misunderstood, or just isolated. These emotions can contribute to one's shutting down and not sharing one's inner experiences with others. It takes a lot of courage to reach out to another person or people, and to talk about the struggle of living with chronic illness. Speaking out can feel risky because how the other person will respond is unknown.

People really just want to be listened to most of the time when sharing feelings about living with chronic illness. Talking about experiences and knowing that someone else is with you, feeling with you, and helping you contain your emotions with you, is usually very helpful.  However, sometimes others feel the need to say something to you, to provide some advice, or feel compelled to try to "fix" what you are feeling. Words...its may seem like the best way to respond. Words...they may seem like the obvious solution to the "problem." Words....words can hurt and may even make some things feel worse. Words are powerful.

Sometimes people do not always know what to say and comments such as "it could be worse" or "you have no reason to be upset, just think positively" may come out in an effort to be helpful. In these situations, it is important to let the person know that such comments are not helpful and to try to explain why they are not. For example, "telling me that I should not feel a certain way just makes me feel worse because I feel what I feel right now, and you telling me that I shouldn't feel that way makes me not want to share any other feelings with you. It makes me feel really lonely." Sometimes all that people need is a little education. Unfortunately, some people just cannot understand no matter how hard you try to explain. Fortunately, one of the most helpful ways people can support you does not require that they use words at all. Being there for you means being with you. Being with includes just listening, holding you, showing you that you are not alone. These are some of the most beneficial requests you can make of your loved ones. They can sit there in silence and still provide you with a feeling of connection.

You may feel as if you have to keep your experiences to yourself if the words your loved ones use are words that hurt rather than help.  You don't. You can share and they can listen. If they are incapable of that then rather than shut down completely find someone else who is willing to do that. There are so many people in the world and they are so close, especially with internet access. There are support groups for people with almost all chronic illnesses and many have online forums if there isn't a chapter in your local area. Also you can speak to a professional who is trained to listen and respond appropriately with words and without words. Words are powerful but they are not everything.

Guilt

The feeling of guilt is no stranger to many people who live with chronic physical illness. For some it is a pervasive feeling and for others it appears sporadically depending on factors like how often one's symptoms interfere with daily life, social functions, and personal or communal responsibilities. There are numerous experiences that can follow with a profound feeling of guilt.  Imagine desperately wanting to attend your best friend's wedding, being ready for it for the last year, and then a week before the event finding out that you have to immediately undergo another round of chemotherapy. How about another scenario? You are chronically exhausted from dialysis and do not have the energy to go on social outings with your friends, so instead you are always inviting them to your place.  Others, may have illnesses that require enormous amounts of rest, such as certain autoimmune diseases. People living with such an illness may be aware that they can only tolerate one of the two weekend events and that trying to push to attend both will result in a lot of suffering. These are only a few of the countless examples.

Although experiences of guilt may follow such situations, these situations do not necessarily require guilt...meaning YOU HAVE NOTHING TO FEEL GUILTY ABOUT! Most people do not want to live with chronic physical illness. Most people do not want to suffer or feel like their suffering disappoints others. Sometimes people who live with chronic illness eventually say goodbye to the guilt. They realize that if others cannot understand that they do not like disappointing, then perhaps these others are not the right people to keep close by. The person living with the illness is already suffering and does not need other people to intensify this by inducing guilty feelings.

The process of letting the guilt go is not an easy one. Part of this process is becomming really aware of your own needs and of what you really can, cannot, want, and do not want to do. Sometimes guilt can persist when one's illness is used as an excuse to avoid dealing with things that one can actually do but does not want to. For example, a person may not want to help a friend move on a given day because s/he has already been invited to a party on the same day. Using the illness as the excuse rather than being honest with the friend and offering to help on another day, is likely to increase this person's feelings of guilt when that same person does have to cancel really because of the illness. The distinctions between what you really can and cannot do get blurred, as do your feelings about it. Therefore it is very important to be honest about what you are going through regarding how your illness limits you.  You will feel good knowing that when you are up to it physically you are doing right by others, and you will feel equally confident in your decision to rest when you are not feeling well. You will acknowledge with confidence that when you are resting it is because you need it and that there is nothing to feel guilty about.

Give yourself the same understanding and kindness that you give to another. Let go of the guilt and surround yourself by people who do understand. You deserve to stay honest and true to yourself and to your loved ones. If you do there is no reason for guilt.

Broken Dreams or Shifting Tides?

Human life cannot be broken. To be broken is death. Life is like water...it takes the shape of the container it is in, it moves as fast as the wind blows, and it cannot break. At times, people who live with chronic physical illness can feel as if the illness has broken them and their dreams; but they are not broken but rather altered. Life goes on and so can the dreams.

Being diagnosed with a chronic physical illness can cast doubt on one's ability to carry out his/her goals and make his/her dreams a reality. This feeling of insecurity can be experienced by people who are born with chronic physical illness as well when they are treated by loved ones as less able or are excessively coddled. Sometimes people may say things like, "maybe you should consider striving for something less challenging" or "I just don't want you to be disappointed." If we think about it, disappointment can happen to anyone, illness-free or not. An illness-free person with no rhythm may dream of being a professional dancer...maybe that person should dream of something less challenging as well. Does that mean people should stop striving; should stop enjoying the things that make them happy in life? There are millions of illness-free people around the world who are discouraged daily. These people decide for themselves when to change dream paths, and people who live with chronic physical illness should be allowed this same basic right.

You are not broken and neither are your dreams. Be like the water and adjust to what the environment has given you--what your body has dealt you. For example, you always wanted to be an athlete but now you have physical limitations. How can you work around it? Yes realistically it may be very difficult but that does not mean impossible. How badly to you want the dream? How much are you willing to try to adjust for it? Natalie Du Toit's dream was to be an Olympic Swimmer. Natalie's left leg was amputated after a car accident. Natalie IS a 10K Olympic Swimmer! Bethany Hamilton had her arm bitten off by a shark. She thought her dream to become a professional competitive surfer were broken. Bethany IS a competitive professional surfer. Thousands of cancer survivors, lupus survivors, multiple sclerosis survivors, stroke survivors, heart attack survivors, kidney disease survivors, and other illness survivors live their dreams everyday because people are like the water whose tides shift with the changes in the environment. People are that resilient...not broken.

You have to decide for yourself when stiving for a particular dream is no longer worth it to you or too uncomfortable given your specific physical condition. Like the water, sometimes you may want to go upstream but if the current pushes you down stream you need to surrender to it. You get to decide for how long you want to push upstream against the current. You get to decide if there are little streams that branch out from the mainstream that you always lived on that could serve as alternative ways of living your dream. There is a direction to go in. You will never be just like a rock stuck with all the water surrounding and living around you. Remember that you are like the water--alive and never broken.

Teasing it all Apart...

So you're living with and receiving treatment for a chronic physical illness; seems pretty straightforward, BUT is it? You have unpleasant experiences, both physical and emotional. You think, "oh that is just the illness acting up." Is it? Maybe it is the medication that you take to treat the illness. Is it? Or do you wonder that maybe it is the depression you experience because you have to live with illness and receive treatment? Which one? All of them? Some sometimes and others other times? How do you tease it all apart?

People who live with chronic physical illness at times can have experiences that seemingly appear to be physical symptoms of the illness. For example, people can feel nauseous or have a rapid heart rate, which both can be the result of an underlying illness, but which can also be side effects of medication. Similarly, memory loss and cognitive confusion can have a neurological etiology or may be the result of the persistent use of certain types of medication. Sometimes very concrete physical reactions such as dizziness and increased blood pressure accompany particular emotional states, such as anxiety. Other times, experiences that appear to be clearly psychological, such as paranoia or hallucinations can actually be the result of a physical problem or a medication. How does one make sense of all this?

It already seems not quite fair that one has to endure life with a chronic physical illness. It is as if the illness was not enough and side of effects of treatments need to be thrown into the mix, as well as potentially any emotional reactions to living with the illness and/or the treatment side effects. Part of what brings many people who live with chronic illness some solace is the element of perceived control--the feeling that you can control aspects of your illness. Oftentimes perceived control can be experienced when a person can label what s/he is feeling in the moment and can feel confident in predicting how long it will last or what will happen next, as well as knowing what to do about the particular feeling. Unfortunately, this task can be extremely difficult when there are so many factors at play. "This time is my nausea the typical nausea I get from my illness or is it the new pill my doctor prescribed? I don't know and that makes me anxious...oh no I get nauseous when I am anxious too." Or what about this scenario: imagine how out of control a person who has no history of mental illness may feel if suddenly s/he hallucinates that s/he is upside down when in fact s/he is lying in bed. No this person is not necessarily psychotic.

It is easy to see how such scenarios can take away some of the sense of control people who live with chronic illness would like to have. However, this is not a hopeless predicament. Like with many situations that people living with chronic illness need to face, this too requires a lot of active coping and some creative thinking. This complicated web of experiences requires one to be a big advocate for him or herself so that one can begin to tease it all apart. For example, it is extremely important to learn about the possible side effects that the treatment you receive has, as well as learning about the symptoms of your particular illness. If your illness and the treatment have some overlap in terms of symptoms then it is extremely important to speak with your doctor about how one goes about differentiating which is which and what to do about it. Having some knowledge about all the things happening to your mind and body can help make it less frightening and more predictable, and in effect may let you feel a bit safer. Additionally, even if you are fairly certain that your discomfort stems directly from your illness and/or the treatment you are receiving, it can be extremely beneficial to speak with a psychologist or psychotherapist as many of your symptoms can contribute to a great amount of emotional stress, anxiety, and depression--all of which are normal reactions to living with a chronic condition. The feeling of loss of the little control that you believed that you had left can be frightening and unearthing as well. It can be very helpful to explore these fears in a safe and non-judgmental environment.

You do not have to tease it all apart alone. In fact you should not try to do it alone. Having a team of family, friends but also of doctors, and therapist can help you make sense of what you are experiencing and why. You cannot tease it apart all at once but piece by piece, moment by moment experience you can start to regain your footing on a sturdier ground. You will see it as a process rather than a one time deal--the process of teasing it apart.

The Me...The Not Me? Integration!

Unless diagnosed in very early childhood, most people who live with chronic physical illness experience a good chunk of life feeling little seperation between physical body and sense of self. Chronic illness, much like other traumatic life events, can leave one confused about what is the "me" and what is the "not me"; what is part of the self and what is an invader? There are multiple reasons ways this new and oftentimes unwanted experience occurs. Imagine, a person has a very serious case of Grave's Disease and s/he is required to undergo radiation with the intention of killing the thyroid. How about people who live with certain cancers that require that body parts be removed, such as in breast cancer or testicular cancer, among many other types of cancer. Think about people who live with lupus where their own immune system attack their own organs.

In just these few, out of many many examples, two or more different aspects of one whole person are forced into odds with each other. What more can a person do but split themselves up into different pieces and view certain parts of him or herself as "me" and other parts as a "not me?" As such, the thyroid in Grave's Disease is a threat, it is "not me" but rather a traitor who betrayed the "me." Just as in cancer where the cancerous cells are the "not me" and in lupus where one's immune system, the supposed artilery of the person, becomes the enemy. People may question and cry about why their body has betrayed them! It becomes the "me" versus my body the "not me."

Although splitting the self into parts is something that all people do from time to time, and with people who live with chronic physical illness is oftentimes a matter of survival, eventually one does benefit from moving into a position of integration. Consider when a person needs to undergo a treatment that will target his or her own body, it is only natural to view one's body or certain parts of it as the "not me" so that it is tolerable to "attack it" via treatment. This is where it can get tricky. For example, the original illness in one's body feels like a traitor so then it is treated, but sometimes the treatment itself can create additional splits of the self by being responsible for visible, painful, or unpleasant side effects (e.g. naseua, hair loss, memory loss, confusion, blood clotting, headaches, seizures, depression, anxiety, and the list goes on). It is easier to see the side effects as "not me" since one can say they are caused by the treatment, which originated outside of the person; however, they are still part of the whole person's experience and eventually needs to be integrated as such as well.

After some time of living with the chronic illness (this will vary from person to person and illness to illness), all these different parts of the whole person can come to be experienced as "me." Just like all people have personality characteristics that they do not like about themselves (e.g. envious, aggressive) but that are acknowledged and accepted as just part of who they are, people have bodily characteristics that are also pieces of the "me." When people hate aspects of their personalities and try to reject those componenents of who they are, it only makes those parts of the self stronger, just like what happens when you continue to see your illness as "not me." Thinking about how much you want a symptom to go away puts a lot of mental focus on the symptom and you are likely to feel it even more. You are also more likely to feel badly about yourself for having been "invaded" by the illness. However, you did not ask for the illness, it just for whatever reason is a part of your life, and ultimately a part of you. Even if your particular illness is cured and you are in remission, it will always be a piece of your life experience. Living through it is a part of you...the "me." Love all parts of yourself, even when you do not necessarily like all of them. If you recognize your illness as the "me" then you will take care of it when it needs attention, let it fade into the background when it is not getting in the way, and be able to attend to the pieces of you that need to be acknowledged in the moment. If the illness stays as a seperate unintegrated "not me" then you may stay in a position of threat, often anxious and alert about when the illness' wrath will strike again, and neglectful of the other components of who you are that may need attention in the moment.

This is not an easy process. Accepting "unhealthy" things as constituents of who you are requires a lot of time and a lot of reflection. It may take years for some people, so be patient with yourself and with your loved ones, and seek out help if you need it.

The Mind-Body Connection: The Influence on Perception

"Am I beautiful? I used to look so much better before I got sick. I hate how I look."

Many chronic physical illnesses come with changes in the body and in appearance. Sometimes the changes are due to the illness itself, such as rashes on the body and face that may occur when living with lupus. Other times it is the treatment that causes the changes, such as hair loss in patients undergoing chemotherapy or weight gain due to certain medications. Sometimes it is the mind-body connection, where there is no actual physical change but the person living with the physical illness perceives one to exist. What is happening in such cases?

People who live with chronic physical illness may at times feel poorly about their appearance, specifically in comparison to how they looked before receiving a diagnosis. Friends and family may look at the person with the illness and wonder what the person is talking about, s/he looks exactly the same as always. However, s/he does not feel the same as always! This person may hurt when trying to engage in any physical activity, including such basic movement as walking. This person may feel stomach pains when eating certain foods or may just constantly experience nausea and dizziness. In these cases, the body hurts but the person looks the same. Yes in some cases increased pain decreases physical activity which may follow with weight gain, but this is not what is now being described and rather people whose appearance has actually not changed is being discussed.

It is hard to imagine how connected the mind and body are, to the point that what you feel in your body can be what you perceive mentally or in your mind, even if that is not what is objectively there. For example, "I feel so disgusting today (meaning I feel physically sick) but when I feel this sick I look disgusting too." The days of understanding the human body as a seperate entity from our mind, including our emotions, perceptions, and thoughts, are over. Being chronically ill not only affects one's health but it can shake up one's entire perception of oneself.

It can be a frightening thought to think that what my body does/feels can affect how I perceive myself, my body image, my appearance, and my self-esteem. It can leave one feeling as if s/he has little control. However, it is important not to forget that the connection is not unidirectional. To the extent that how you physically feel can influence your perceptions, your perceptions can also affect how you physically feel. There are multiple techniques for changing how you see yourself and the world that can distract you from your physical symptoms and even lessen them. Some might even suggests cure...but that is something to be discussed with your individual doctor.

So it can go a couple of ways: 1. I hate how I feel right now (physically), I look disgusting and don't really want to go anywhere. 2. I feel gross (physically) but I am going to do something nice for myself anyway because I might as well show myself some kindness since my illness is not. Oh... and I just realized that this illness does not have complete control over me! 3. Ok so maybe today I feel too sick to take a shower and get dressed and I just need to stay in my pjs in bed, but that does not mean tomorrow has to be the same.

People must take care of both mind and body, especially when one is particularly weak, the other can help balance and pick up the slack so to speak. Everything within you is connected. You are not just a body or just a bunch of thoughts, but rather a whole person, whose entire being must be cared for and nurtured. Take some time to think about why you may feel so badly about your appearance when you objectively look the same. Maybe it is because your body hurts and is sufferring. Does your mind have to suffer too or can it be the healthy part of you, helping to maintain balance in your being? This is not an easy task and you might need some help from a support group or a psychologist; however it is not an impossible task. It is a real possibility!

Mirror Mirror on the Wall...

Mirror mirror on the wall, why can't I see my experience in you? Mirror mirror on the wall, why can you no longer show me who I am? Mirror mirror on the wall, you used to see me before I got my illness and now you just don't seem to understand. Mirror why do I feel so all alone?

According to Heinz Kohut and self psychological theory, a healthy sense of self evolves during childhood when three particular experiences take place. These experiences include, first having a role model to look up to and which one can idealize and desire to be like. The second is having a relationship with a parental figure who evokes a certain likeness between himself and the child. Lastly but certainly not least is the third, and it is what is called a "mirroring" experience. The mirroring experience is when the child presents some aspect of him or herself (e.g. thoughts, feelings, artwork, behaviors) and the parental figure acknowledges and validates the existence of what the child presents...much like a mirror. Although these exeperiences allow the child to start out with a very grandiose sense of him or herself, as normal disappointments in life occur a person learns to soothe him or herself, and learns that frustrations are a part of life, rather than destructive. This is how people build up resilience.

Mirroring for a child is not a very difficult thing to do. It can be easy to understand a child's desire to feel pride, happiness, and even guilt or shame at times, as these tend to be quite universal feelings. Many people grow into adults that have a pretty solid sense that if they communicate what they are experiencing to others, the others will empathize or at the very least understand. However, there are experiences that are not universally shared, such as traumas. Not everyone serves in the military encountering daily death/injury; not everyone is raped; not everyone is diagnosed with a chronic physical illness. What happens when these traumas occur? How does this impact the self?

When a person experiences something outside of daily normal life, particularly when it threatens life as it had been previously known to the person, experiential time can stop. For example, a person is diagnosed with a chronic physical illness that nobody else that he or she knows has. This illness requires massive life adjustments and learning to tolerate physical discomfort and pain. This person really just wants to be understood. S/he just wants to be able to look in the mirror in another person and to just feel a mutual understanding. However, in cases like this, the person may look into the mirror for a reflective understanding and may find that s/he has to start describing to the mirror what the experience of having the illness is like. Where is the mirror? If the mirror cannot reflect what I am going through then why bother talking? It feels so lonely.

Just as in childhood, the more people face daily frustrations and see that they are tolerable, the more resilient the child becomes. Disappointments are a piece of the nature of life and therefore are things that are also universally shared with others. One can fail a test and feel sad and the mirroring mother can say to the child with a real sense of reflective understanding, "oh I know you feel so sad that you did not do well." What happens when the frustration is one caused by constant physical pain, nausea, fevers, drastic weight change, inflamation, massive fatigue, fear of hospitalization, or fear of death? Sometimes the mirroring effect becomes something like a fun house mirror where you look into the glass and see a distorted image of yourself. A person with a chronic physical illness may try to start describing a feeling related to living with the particular illness and his or her mother may try to reflect something sympathetic back, but it misses the mark because this mother never experienced anything like the particular illness before. This can leave things going one of two ways for the person living with the illness. One, the person may shut down completely and continue to carry this experience all alone, feeling isolated, and person even harming his or her own sense of self (e.g. I am the only loser with such bad luck as to get this sick). Two, the person can strive to find people who share the experience of living with the chronic illness.

Imagine joining a support group where you get to meet and speak with other people who live with the same experience. This becomes like the child who brings his crayon drawing to his mother and says, "mama look what I made" and the mama says, "its so beautiful." As a person living with a chronic physical illness, you may say in the group, "my hair keeps falling out" and another person in the group says, "it is so terrifying." Mirror...mirror....

Now that you have found a new mirror, that does not mean you need to abandon any hope for support from your friends or family. Sometimes it just requires a little education and patience. Remember, they have never been through what you are going through so it is not easy for them either. It is hard to watch someone you love suffer and not know what to do. Let your loved ones know that they should not jump to any conclusions about how you feel and to try to read as much as they can about your illness and maybe attend parent/friend of people living with illness support groups to learn more about the illness. Also remind them, that as human beings, even though they may not have a chronic illness, they all experience moments when mortality is made present. They can think about when they felt really sick from a flu or virus, or if they have ever had a surgery or procedure. These things are not the same as your illness but it can open up little bits of empathy. Also all people have thought about fears of death before. There are ways to relate to what can feel like the unrelatable.

Children do not get to choose what kind of mirroring they get. Unfortunately some get the fun house mirrors and may grow up with very distorted images of their selves. As adults there is a choice. You can choose to find people who will understand you. You can look into the mirror and see yourself in someone else. You do not have to be alone.

Living with Lupus Seminar

I will be among a number of speakers this coming Saturday, March 17th, who will be speaking about living with lupus. My discussion will specifically be about many of the psychological experiences that people with lupus may encounter and the benefits of psychotherapy. The seminar will be held at Cap21 at 18 west18th street (between 5th and 6th Avenue)in room 605 NYC between 11:30am-3:30am. Anyone interested in attending can register by emailing seminars@sistazreachingout.org. Come out and show your support!

How Can I Share How I Feel When I CAN'T FIND THE WORDS!

Imagine living with a chronic illness that provides you with a daily experience of your body and of your life that people around you do not understand. It can become very frustrating and very lonely as one persistently tries to explain to others what it is like to live with his or her given illness. At times it is easier to give up because of the exhaustion following continuous repetition and disappointment with others. Imagine how much more isolating it would be to live with chronic illness and to not be physically able to find the words to even try to share your experience with others. This can be isolating, frightening, and definitely challenging.

Many people who live with chronic physical illnesses experience a variety of cognitive difficulties, ranging from mild but frustrating to serious and impairing. Sometimes these cognitive changes include problems with language. For example, illnesses such as Alzheimer's Disease, other forms of Dementia, certain Traumatic Brain Injuries, and Parkinson's Disease can often be accompanied by various forms of Aphasia. Aphasia is a broad term referring to difficulty producing speech, and can include the leaving out of important words in sentences, the inability to speak fluidly, or sometimes creating sentences that are nonsensical, among other things. Sometimes Anomia is also present, meaning that a person cannot name an item that he or she sees. Other illnesses, including Multiple Sclerosis and Lupus can lead to a less severe form of Aphasia called Dysphasia. Dysphasia refers to when a person has a hard time retrieving words when speaking and gets "stuck" trying to recall a word that is otherwise frequently used. People suffering from Dysphasia also commonly begin to make frequent spelling errors, which they did not do so before the onset of their illness. Regardless of the obvious functional difficulties that these cognitive impairments create in one's life, they also can follow with a psychological experience of isolation.

People living with certain chronic illnesses may have a difficult time producing the sentence "please hand me a glass of water; " however, there are many ways to work around this. One can point to the glass, can show a picture of a glass of water, can get the glass of water him or her self, or can write part or most of the sentence on paper. What happens when one wants to share feelings about how being diagnosed with an illness has followed with a mourning of a life once lived? Or what happens when a person wants to explain to their friends how fatigue is so bad that he or she can not stay up late anymore despite a desire to, and even though it causes sadness. A person can try to share these experiences but they are much more complex than trying to communicate "pass me the glass of water." This can leave a person feeling very alone.

Aphasias or Dysphasia can sometimes rob one of the "being with the other" moment--the moment where one can really be with a loved one, share emotions that come from a deep place within, and let the loved one witness the affective reaction that comes with sharing. It is a beautiful thing to cry with someone, to yell out your frustrations, or to just hear you. So what can people with such a cognitive predicament do? Yes there are cognitive exercises and speech pathologists that can sometimes help; however, not always. Regardless, one CAN share how he or she feels even when he or she cannot find the words. Try to speak what you want to say. People who love you will be patient and sometimes may try to fill in the words for you, to which you can then tell them if it is the right word or not. You will be surprised how sometimes loved ones can be so attuned to you that they will be able to identify words that you want to say. If the situation is more serious and it is too difficult to try to speak your experience, consider another communication medium such as drawing or painting. The image may not be the exact words that you want to share with the other person but the key is that you will not be alone with your experience--you will not be isolated from the people around you. Most importantly, never underestimated the power of non-verbal communication. Sometimes a glance, a posture, or a gesture says a thousand words. You can show a loved one your feelings though non-verbal means and then you can let them be there for you.

So perhaps you wont be articulating yourself perfectly using precisely the most appropriately chosen words anymore. Yes it is a loss...a sad loss. However, do not forget the most important thing, which is making sure to not isolate yourself. Anger and sadness about loss can leave people wanting to shut themselves up alone in a hole, especially when it is hard to verbally communicate. People need people to be with each other and to acknowledge each others' existence and feeling states. I am not saying that it wont be frustrating at times, but you CAN share how you feel without words...just be. Be with others and there will be a way. You will not be alone in your experience ... you do not have to.

It Is Ok that its Not Ok!

People with chronic physical illness frequently hear questions such as, "how are you feeling," " but it is not serious right," "you don't have to change your lifestyle, do you?" Oftentimes before the person with the chronic illness gets a chance to even respond, the questioning person thwarts expansion of the dialogue by saying something like, "I know you'll be ok" or "you're ok, you were always and ok and you will be." Such statements while on the surface appear to be supportive and encouraging can be quite dissonant from what the person with the chronic illness is likely to be experiencing. Depending on the particular illness, the stage of the illness, and various individual factors, the person with the chronic illness may not feel that everything is going to be ok and in fact in some instances things may not be "ok."

Although loved ones may believe that they are being helpful or "keeping a chronically ill person's spirits up" by denying the reality of the seriousness of a chronic condition, they may in fact be hurting the person who lives with the illness. The person who lives with the chronic illness may know very well if they have a poor prognosis, or even if their prognosis is good, they may mourn the changes that have had to be made in life in order to cope with the illness. Even in the best case scenario, it is not ok that a person's body fails in some way and it is not ok that adjustments have to be made. Acknowledging reality does not mean that one cannot be humble and grateful for what he or she still has, or that one cannot be optimistic about the future. Accepting reality and keeping a positive attitude can coexist.

There are times when people who live with a chronic physical illness may want to become nostalgic and talk about what their bodies used to be able to do. Mourning is part of a process of accepting one's illness and current state, and sometimes part of mourning is sharing old memories with others, similar to when a person loses a loved one and then finds himself sharing stories about that person. The person with a chronic illness, who can be any age, may just want to talk about how her or his life used to be before the illness forced certain changes, and may just need someone to listen and let them cry. Loved ones need to know that this is NOT a destructive thing for the person with the illness. It will not cause depression or destruction--it is part of healing. Loved ones need to be able to separate their own anxiety from the person with the chronic illness' anxiety. It is important to remember that people who live with chronic illness, especially younger people with illness, are forced to face issues of mortality and fragility much earlier than most other people do. Oftentimes, the folks with the illness become much more comfortable addressing such issues than their non-chronically ill counterparts. So when loved ones shut down any conversation about how being chronically ill is not ok, the underlying motive is really to prevent themselves from feeling anxious over issues of mortality. It seems like its about the person with the illness but really...its not.

If you really want it to be about the people who live with the chronic illness, then lend them your ear. Let them talk about how its not ok to be going through what they are going through. Let them know that its ok that things are not necessarily ok and they do not have to be something that they are not. Let them cry. Be unselfish and tolerate your own anxiety so that your loved ones will feel free to express themselves to you. This is really what will keep one's spirits up, what will really be helpful, and what will not feel dissonant from the person who lives with chronic illness' experience. Unfortunately sometimes there are people who live with chronic illness who have loved ones who are not capable of putting their own anxieties about mortality aside and who cannot provide this open space for their loves ones. In these cases it is imperative for the person with the chronic illness to seek support elsewhere, either through a support group, in psychotherapy, or from any other person who will let you know that IT IS OK THAT ITS NOT OK!

Introjects or Independence

When living with a chronic physical illness one must engage in a tricky balancing act between making sure to give oneself the care that one deserves versus maintaining an active and fulfilling life. At times, folks who have chronic physical illness need to opt out of certain events or delay addressing certain responsibilities in order to maintain a level of health. Other times, these same people may push themselves to get through the day and to see all the people that they need to see. Neither option is more correct, as everything depends on that specific instance and on the context of the situation. The root of the decision-making is also extremely significant. Does the decision come from a place of independent action and desire, or does it come from a deeply seeded fear of letting others down?

According to psychoanalytic theory, all human beings possess what are called introjects. Roughly speaking, introjects are the internalized ways of being and experiences of ourselves that follow from what one's parents persistently and consistently expected/expects from him or her. Some people may have internalized the idea that they are never good enough unless they maintain an impossible ideal of perfection. It is likely that these people have a narcissistic parent who needs to remain as "the best" and therefore creates situations where everyone else can never be good enough, especially his or her children who are viewed as competition. A message gets passed down to the child that no matter how successful he or she is there will always be something wrong or not good enough with the child, which keeps the parent in a dominant position. This critical introject will remain as a part of the person not only through childhood but throughout one's life, and can continue to influence a person's decisions and actions unless analyzed or understood further.

People with such introjects tend to overachieve with an underlying hope that their parent will eventually approve, even after that parent is no longer around. The internalized idea that anything less than perfect will follow with criticism and disappointment drives some people to behave in ways that might actually be harmful to themselves. For example, an individual may not be feeling well, may have a fever, and feel exhausted; however, she or he will still go to their job and work 7 out of the 8 hours in the workday and then will come home and feel guilt and anger for not working the full 8 hours. Others viewing this from the outside are more likely to see how irrational this person's behavior and feelings are, while the person him or herself can only experience him or herself as a failure, despite feeling physically very ill.

It is important for people who live with chronic physical illness to be able to identify the impetus behind their actions. Even when not in an acute moment of illness, some chronic illnesses require preemptive rest in order to avoid future symptomatic periods. Therefore, when one who lives with a chronic physical illness is thinking about pushing him or herself, it is helpful to take a minute and just think about why. Why do I want to give it my all today? Is it because this activity is really meaningful to me? Is it because if I do not I will just be less than perfect, a failure, like my mother always expected me to be? Is pushing myself today and possibly feeling ill tomorrow worth this? Is this my introject or my independence?

Although not every one who has a chronic physical illness has had a narcissistic parent or such a critical introject, it is always important for everyone with a chronic physical illness to put some thought into their actions. Frivolously acting without thought can be dangerous to one's health. Living with a chronic physical illness can really force some into analyzing why they feel the way they do, why they act in the manner they act, and may shed light onto the roles that certain key family members played in their development. Understanding oneself in this deep and meaningful way is the beginning of true independence.

Beneath the Anger

Do people ever ask you why you seem to be so grumpy lately? Do you ever find yourself snapping at others easily or just feeling yourself tense up for no apparent reason? Do you question yourself about why you seem to be so angry?

Anger can sometimes be a significant part of living with a chronic physical illness. There are many things that one can feel angry about. The anger is not limited to just the initial shock of the diagnosis or to the adjustments that it forces one to make. Anger can persist throughout various moments in the life of a person who has a chronic illness, and for many different reasons. Do you ever wonder what that seemingly random uprising of anger is about? Think about what is beneath your anger.

Lying underneath your anger may be feelings of sadness and pain. Not everyone is comfortable with allowing hurt, pain, depression, or sadness to be consciously recognized and felt. Sometimes it is easier to just be angry rather than sad. Other times one may be experiencing a sense of not being understood by others, which can follow with feelings of loneliness and isolation. If a person is not aware of these feelings or does not have the words to describe them, an uncanny and unidentified frustration or anger may emerge. There are moments when people are reminded of a life prior to their illness as well. These moments can also serve as catalysts for feeling angry. The underlying reasons are infinite, and although there are certainly shared experiences among different people, it is helpful to figure out your specific reason in a given moment.

Sure one can just be angry because something unfair happened or someone did something that was anger-provoking. However, many times when living with a chronic physical illness you may be left wondering "why am I so angry right now?" Rather than let the anger wear you down or push people away, really think about what is beneath the anger. Maybe keep a journal and track events that have occurred and how you felt at each moment, or try to make sense of it by speaking with a psychotherapist, or maybe meditate. There are multiple paths to coming to an understanding. Find what works for you. Some might think, "what's the big deal about just being angry?" There is no big deal; however, if you find yourself angry more often than not you do not have to live that way. If it is possible to feel content more often than angry, why not? Don't you deserve that? If your answer is no then I would encourage you to think about what is beneath that as well.

Seminar Saturday Jan 21st. Living with Lupus!!!

Saturday I will be one of a few presenters giving a talk in NYC on Living with Lupus. My talk will specifically be on psychological experiences that come up when living with lupus and the role of psychotherapy. There will be a series of presenters discussing various issues related to lupus.If you are interested in attending let me know and I'll give you details on how to register! Hope to see you there!

Limitations...

People who live with chronic physical illness are no strangers to the word "limitations." Although all human beings, including those who do not live with chronic physical illness have limitations, the limitations are usually not acknowledged or experienced as a reality until one has reason to do so. Just like with the reality of death, most people do not want to think about the reality of human limitations, but this is something that people who live with chronic physical illness cannot avoid. In fact, many people with chronic physical illness may be completely tired of hearing about their limitations. It seems as if just when it seems that the concept of limitations has been discussed to no end, a new angle on the topic of limitations arises.

Living with a chronic physical illness can be a constant process of adjustment. One may think that he or she has come to accept the life changes that come with living with a particular illness, shoving the reality of limitations into the background, until suddenly a new adjustment is necessary, exposing the reality of one's limitations all over again. For example, imagine being diagnosed with a chronic illness which requires one to alter his or her work schedule. One may feel the need to resist these necessary changes until he or she realizes the need for an adjustment and accepts the alterations necessary. At this point this person may feel good about his or her life situation and may experience his or her limitations as something that has been dealt with and now put aside. But what happens when after a year or two that same person's symptoms change or worsen? This person's current system of dealing with his or her limitations may no longer function as needed, making the person's limitations something that again needs to be addressed.

It is not easy for anyone, chronic illness or not, to accept that humans are not capable of doing everything. People who live with chronic physical illness inevitably have to learn to accept this reality through a fluid process. Learning to live with human limitations is not something that happens after a one time adjustment or event. Rather it requires an ability to be able to accept a constant evolution in how one's limitations impacts his or her life and in how one will cope with these changes. This is not an easy thing to do and can follow with an enormous amount of frustration, anger, sadness, and even depression. It takes incredible strength to just acknowledge and accept that another adjustment in necessary, and to then get to working on it. One does not have to go through this process of coping with limitations alone.

See the limitation, accept, adjust...but you do not need to do it by yourself! Express your needs to others (e.g. your employer, partner, family, or friends). Ask for help with the adjustment. Speak up...you are not annoying, a burden, or a nag. Your needs matter. Talk to a professional. You do not have to get through this transitions alone.

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!

Jingle Bell or Holiday Hell? Part 2: Balancing Act

Holiday cheer, Christmas songs, gingerbread cookies, eggnog, and carolers oh so nice; shopping mayhem, endless baking, non-stop Christmas songs, want to break that CD player, the tenth holiday party of the week, out of town visitors, shows and pageants...when can I get some sleep?

The holiday time is certainly a test of how well people can pace themselves and of managing an overload of expectations. Yes EXPECTATIONS...not responsibilities. During the holiday season, it is easy to confuse expectations with responsibilities. Oftentimes, people experience certain events as things that they must do lest they let down their loved ones. However, when one really thinks about it, is the holiday season really any different from the rest of the year? It is true that there can be many fun and exciting events during the holiday time, but exciting and fun can quickly turn to burdensome or overwhelming if not properly managed.

The holiday season balancing act is something that most people in the western world experience every year; however, this balancing act can be especially challenging for people who live with chronic physical illness. Although most people need to figure out how to manage the numerous holiday parties and events of the year, some people with certain illnesses need to pay even more attention to the amount of rest that they are getting, how much physical activity can be tolerated, and what level of stress is appropriate. The responsibility of balancing one's activities and health makes it very apparent to some people with chronic illness, that their illness is a reality and it can serve as a reminder of some of their limitations or life adjustments. This realization can cause some to experience various feelings such as sadness, anger, frustration, denial, or helplessness, at a time where society sets an expectation of joy and cheer. Sometimes these unpleasant feelings may result in some people with chronic illness wanting to engage in as many holiday activities as possible in an effort to will away the reality of their condition, which can follow with a worsening of one's health. On the other hand, just because a person lives with chronic physical illness does not mean that he or she is banned from participating in holiday activities all together. This is another extreme that can follow from people's loved ones' fears and concerns about the person with the illness, or from the person with the illness him or herself becoming depressed and hopeless, and believing that living with an illness means having a poor quality of life.

The key is balance...no different from folks who do not have a chronic condition. Sure, mastering the correct balance for yourself may be trickier than the balancing act of a person without a chronic illness; however it is completely possible. An important thing to keep in mind is that the holiday season is a time for fun, love, and joy. It is easy for these things to be forgotten as the societal message is one of "musts," making the distinction between expectation and responsibility difficult. Attending a million holiday events is nobody's responsibility but it may be expected by some folks in your life. Do not forget that it is ok to not meet everyone's expectations for what you can or cannot do during the holidays. What will happen if you pass on some holiday events for the benefit of yourself? Nothing other than feeling physically good, probably emotionally good, and able to partake in your actually responsibilities. So you balance: you choose what holiday events are really important to you and you take part in them, and the one's that are not on the top of your list you pass on. If anyone else is bothered by this then it is their problem to deal with as it was their expectation that led to their own disappointment, and this is something that you can communicate to them.

The holiday season can at times leave people feeling a bit helpless. Get empowered! Stand up for yourself and your needs, and communicate them when you are not feeling understood. BALANCE YOURSELF!

Happy Holidays!

Jingle Bell or Holiday Hell? Part 1: Inquiring Minds

In the spirit of the holiday season the next few posts will be a series encompassing some of the many scenarios and experiences that accompany the holidays. This series will begin with an account of what family holiday reunions with extended and at times immediate family can be like. Eggnog, Christmas trees, mistletoe, hot cocoa, and many inquiring minds.

It can be overwhelming enough having to explain to "new" people on a daily basis what your illness is, how it affects your health and daily functioning, and what treatments you are currently receiving, but imagine flocks of relatives who have not seen you in a while. Sure most of them genuinely care and are curious to know how you are really doing. On the other hand, there might also be a couple of nosy relatives or family friends who you are pretty sure thrive on knowing the most information that they can possibly gather. As such, holiday parties although joyous can become a bit exhausting. Imagine hearing, "Oh my you look really good," as if implying "given your condition I expected to see a waif with dark under eye circles and bags." Another scenario is interacting with the "google doctors" who decide it is their mission to give you advice about your condition. Such as, "I know your doctor says that your treatment is the best option, and despite multiple additional opinions that you've received, I read on the internet that the best course of treatment for your condition is ..." Or "Are you sure that's your diagnosis? It says on the internet that these symptoms are indicative of ..."

So how does one stay sane within these scenarios? It is easy to forget that most of these inquiring minds simply care and are trying to be helpful. It might be necessary to be assertive and let these inquiring minds know that their input is thoughtful but that you have it covered and that you feel confident in your doctor's actions...unless you don't, then you might want to hear some input. Do not feel trapped! Just because someone may raise the topic of your health does not mean you need to continue the conversation. You can tactfully change the subject, excuse yourself to get a drink or to go to the bathroom, or have a prearrangement with a close friend/relative, whose job it is to steer conversations away from talking about your health. All this assumes you want to avoid such discussion. If you do not mind talking about how your health has been, then this might be a dream situation for you and there is no right or wrong way to feel in this scenario.

Although the discussion of this topic was presented in a light and festive manner, it is in no way meant to belittle what an overwhelming experience this can be for some people who live with chronic physical illness. For others, issues such as managing time during the holidays, not overly exerting oneself physically, or experiencing feelings that may come up when one may not be able to partake in certain holiday activities because of illness, may be more pertinent. As such, the holiday series will continue with discussions of these additional topics. However, comments and ideas about what situations may be difficult for those living with chronic physical illness are most welcome! Happy Holidays!

Transitions

It is easy for some people to say that "everything is going to be ok" or that eventually "one will find meaning in his/her illness;" however, this can feel anything but ok for those who are not yet at that emotional place. Trying to motivate and inspire others who may be going through similar experiences can be helpful to both the one doing the motivating and to the recipients of the motivation. At the same time, it is important to take into consideration what stage of coping with one's illness a person is in. Living with chronic physical illness includes constant transitions between disparate stages of coping.

Many medical and mental health practitioners talk about the different stages people move through from the moment they receive a medical diagnosis, and as they begin to learn to adjust to and live with this diagnosis. Some believe that everyone moves through a specific sequence of stages, while others believe that this process is not so linear and that people can move through the stages in varying order. Regardless of the order, different people who live with chronic illness can be experiencing different stages of coping at different times, which depending on how this is dealt with may or may not leave some feeling misunderstood. Imagine a person who is in a period of anger. This person is angry that he or she has a chronic diagnosis and this person refuses to accept that changes in life are necessary. This person may live this period of life in a reactionary position; denying the impact of the illness and living as if nothing has changed. Another person who has been struggling with the same illness for some years tells this person, "slow down, make some adjustments, you will only make things worse for yourself." The angry person may experience the second person's advice as insulting, as a threat to one's own independence, and ultimately will feel misunderstood. It is not that the second person's advise is wrong or inconsiderate, but rather these people are in two different stages of living with their illness.

Ideally a person will transition from stages of anger, denial, hopelessness, and fear to a stages of acceptance, adjustment, and meaning. Nobody can push a person along to a more adaptive stage, but rather a person must experience the transition for him or herself. Of course this can be hard for one's loved ones who may want to help and may feel helpless in doing so. The challenge is finding a balance between acknowledging and validating the stage one is in at the moment, while staying optimistic and suggesting the possibility for change at some point in the future. Others who have gone through similar transitions because of chronic illness are in a position to empathize with people struggling to transition through these stages themselves. This empathy can go a long way. For example, "I get how frustrating it feels when your friends tell you to slow down and not go to work as much. I imagine it feels like you are useless sometimes. It makes me think about all the things you have wanted to work on but never had time to because of work...like all the books you've always wanted to read or that writing you wanted to do, or all the friends you miss calling up on the phone." Of course the statements will be tailor made for the specific person you are talking to but the overall message is that "I get it...but there is life after chronic illness...and good life is possible."

Living with chronic illness is not a static position, but rather it is a process. Living through these transitions can feel very lonely if others do not allow one to just be in whatever stage of coping that one happens to be in at a given time. People living with chronic illness do not have to feel lonely. Loved ones can stand by their side through a natural flow of transitions, holding their hands emotionally by acknowledging what their current experience is and letting them know that it is ok to feel whatever it is that they are feeling. The more people try to force a change in their loved one, the more resistance that they might meet.

The Little Things The Larger Picture: Small Mind or Big Mind?

Sometimes being diagnosed with a chronic physical illness follows with a new-found ability to experience the world through what Buddhist teaching calls "big mind." "Big mind" is the freedom to understand and feel that there is so much more beyond you, and that your life is connected to all living others around you. However, what many people tend to experience on a daily basis is "little mind." Little mind, is what happens when people are trapped within the confines of their ego, worrying about the "I" or "me me me", and it is difficult to see beyond your immediate worries.

I think it is safe to say that everyone sometimes gets stuck on the minutia of daily life, which can seem so big at one point and so meaningless at other times. What are these little things? They can be anything: work stressors, doing the laundry, buying the groceries, what you are going to wear at a party, worries about offending others with your opinions, your beliefs differing from your loved ones' beliefs, and the list goes on. People can spend so much time agonizing over these little things that they rarely think about the bigger picture in life. Sure, people value each others' existence and needs, but it is not too often that people really embrace their appreciation for fellow mankind and put their daily worries about the little things aside. However, the scale may tend to tip to the opposite side for some who live with chronic physical illness.

People who live with chronic physical illness are reminded on a periodic basis that life is precious, rather than limitless. Of course people who live with chronic illness also fall into the trap of worrying about the little things; however, often times they have a larger picture to worry about, which can typically include the feelings and needs of others, (e.g. will I feel ok enough today to not let down my coworkers, how will how I feel today affect my loved ones, will I be around enough for my family). However, not only can the care and extreme consideration extend to a person's immediate circle, but it can also extend to a desire to want to help others in general.

Why does this happen? Besides there being a visceral understand of mortality and the limits of our individual humanity, there can also be a need to feel useful. In many instances, being diagnosed with a chronic physical illness can result in feelings of frustrations with one's inability or compromised ability to do things that one used to do. Thinking of others, giving back to others in any way--emotionally or concretely allows for people to experience their continued connection with humanity and ultimately with life. Things may be different after the onset of chronic illness; however there is still life. I doubt that this often occurs consciously but rather is born out of the human natural desire to feel connected to others which in essence follows with feeling alive-- a part of.

Anyone, chronic illness or not, can choose to work towards "big mind"; however, I wonder if certain experiences, such as living with a chronic illness expedites getting to a wiser place. Again, just like everything else people have choices to make. One can receive a diagnosis and become stuck in "little mind" becoming frustrated about all the annoying changes that have to be made in one's life and thinking about "me me me"; or that same person may want to use his or her experience as a catalyst for enjoying the joy and aliveness that comes from turning the "me me me to the us us us."

This brief streaming of thoughts is an extremely simplified description of the very deep and intricate Buddhist philosophical concepts of big and little mind. However, the essence of the above is an invocation of appreciation and love for each other. In the spirit of the Thanksgiving Holiday, may we put aside daily annoyances and frustrations with things that are not exactly going "our way," and think about what we can give to each other. After all, what are we most thankful for anyway? Usually people are most thankful for their loved ones, much more than they are for their money or any other personal object. There is a reason for that and sometimes it takes a diagnosis for people to maintain that Thanksgiving feeling on a daily basis. Let us try!

Active Coping or Destructive Manic Defense?

When living with chronic physical illness it is sometimes very helpful to distract the mind from focusing on the illness or the pain, and to refocus thoughts on pleasant activities or tasks. This is a form of active coping and it can be extremely successful in alleviating one's pain associated with the illness. Focusing on pain that accompanies one's illness can actually intensify the pain and can contribute to feelings of helplessness and depression. On the other hand, attempting to maintain as normal or as satisfying a life as possible despite one's illness can minimize the intensity of physical and emotional suffering.

It is generally understood--active coping is a good thing! However, like many other situations or constructs in life, too much of something or too extreme of a position can become harmful and can distort the benefits originally intended. With respects to active coping at an excessive pace, one might be engaging in what psychodynamic literature identifies as the manic defense. Broadly speaking, the manic defense is an attempt to deny feelings of sadness or depression by adopting an overly active and/or triumphant position. It is similar to denial but is manifested not only through words but through actions as well. For example, a person may be experiencing a situation that calls for sadness or loss, and which others around this person can identify as a difficult situation. Loved ones may inquire as to how the person is dealing with the particular experience and that person may respond by saying "everything is fine" and then proceed to invite others along on a series of back to back activities that leave no time for rest and reflection.

Some may wonder, so what's the big deal? Defenses are in place to help people defend against anxiety and are basically ways of coping. However, again it is the extreme use of the defenses that could be problematic. Imagine, if one continuously engages in a manic defense by constantly putting his or her body through activities and tasks; when does that person rest? Eventually that person will rest and it will hurt and most likely more than if the person paced him or herself a little more and took adequate breaks between activities. So there is the physical consequences, but there is also the emotional consequence. Every time one pauses and allows some space between activities, it is a reminder of the fact that the body needs rest, that nobody has a healthy body forever, and that as people we have limitations--we are not immortal superpeople. This type of reflection is difficult, but over time this paced reflection and processing allows for one to come to terms with his or her condition. If the opposite occurs and there is no gradual reflection time, the sadness or feelings of loss associated with the illness are denied. Eventually when the person does rest, depression may hit the person like a ton of bricks. Reality can not be escaped forever.

Solution=balance + pace. Living with chronic physical illness is undeniably sad at times and can involve a sense of loss. Similarly there can be a lot of physical pain and/or discomfort. Paced active coping can certainly help one live a fulfilled and active life, and can ease physical pain and discomfort. However, there needs to be a balance between activity and rest and reflection. With rest and reflection comes wisdom about what experiences and events really matter. There is a difference between fearing that life is short and therefore wanting to live it to the fullest, versus fearing death and wasting life engaging in as many things as you can, so you don't "miss out" when in actuality you may very well be "missing out" on things that really matter to you. Don't let life pass you by. The illness, the pain, and the discomfort although unwanted is part of your life. It is evidence that you breathe, have a heart beat, and a body that is mortal. Embrace it in order to accept and let it go when you want to do things that have meaning to you. LIVE!