Isolation NOT Necessary

Person A: "How have you been?"
Person B: "I have not been well. I am in a lot of pain and my body has been doing some strange things."
Person A: "Oh. I am sorry to hear that BUT at least...." or "BUT it could be worse" or "So anyway, how about that weather...."

Oftentimes people do not know how to respond to comments made about physical suffering and the emotions that accompany it. It is very hard to witness health problems in others because it serves as a reminder of one's own mortality and fragility, and this creates anxiety. Therefore many times people do not really want to hear how a person who lives with chronic physical illness feels, despite actually caring or loving that person very much. The person asks how one has been because s/he really does care; however, that same person may also have a very hard time tolerating what is heard.  S/he may just want his/her loved one to be ok, partly because of love for the person and partly because of her/his own existential fears about the fragility of human health.

Imagine what this kind of interaction is like for the person who lives with the illness. A person may truly need to share his or her feelings about what it is like to live with the illness. This person may want to speak genuinely about various components of having the illness, including the not so pleasant ones. It can be lonely and a person can end up experiencing a sense of isolation. For example, in the fictional scenario above, Person B may want to share with Person A what strange things his/her body has been doing, as well as what emotions these physical changes bring up. Unfortunately Person A tries to avoid further discussion of unpleasant content, which leaves Person B alone with his/her true feelings.

For those living with chronic physical illness it is imperative to express to loved ones the need to be able to talk about all experiences that come along with living with the illness. Sometimes people are just unaware that they are avoiding certain conversations, and surprisingly confronting people on this issue may actually lead to a more fruitful exchange of feelings. Perhaps the other person may be able to share with the person living with the illness as well, and the two people then have the experience of being there for each other. It is easy to make assumptions about why people do or say what they do or do not; however, oftentimes these assumptions are proved wrong when actually addressed in conversation.

For loved ones of people living with chronic physical illness, try to imagine how the person living with the illness feels. That person is already alone in carrying the physical illness; but s/he does not have to been alone in all of the emotional experiences that come along with it. Yes it is extremely difficult sometimes to hear about all the fear, anxieties, and suffering that comes along with chronic physical illness; however, tolerating the difficulty will be a great gift to the person living with the illness.

Not all people have the ability to be able to listen to some of the darkness that comes with living with chronic physical illness. This does not mean one needs to give up and hold all unpleasant feelings alone, while only showing the optimistic positive ones. This just means that if you cannot talk to one person about these things you keep searching for a person that you can speak to about these things. After all, at times you may actually be feeling optimistic and want to talk about certain positive things going on...in this case that person who could not tolerate the unpleasant things would be a perfect person to speak to. Everyone has a role that they can play. The bottom line is, be active. Do not allow yourself to fall in to a pattern of isolation. Not all people are the same and if one cannot give you what you need, find another. Ultimately there are always support groups and psychotherapists who are available if this becomes too much of a challenge. You never have to be alone. Isolation is NOT necessary!

Peace...

It is not uncommon for those living with chronic physical illness to frequently think about what could happen in the future. Thoughts such as, "what if my health worsens?" or "what if I end up in the hospital?" or "what if I die?" can often come up. Many times these thoughts are experienced as real; as if they are actually happening in the moment, and the physiological and emotional reactions that ensue are attached to the thoughts rather than to the reality of the here and now. The human ability to create one's own reality is astonishing; however, unfortunately many people are usually too busy creating a potential within their minds rather than living the here and now.

People living with chronic physical illness have every reason to worry about their future and the state of their health. This makes perfect sense. Sadly while people worry about what could happen later, they can miss out on living now. Thoughts are so powerful and it can be so difficult to not worry about the future; however, people forget that they create thoughts/worries, and they have the power to find peace from them as well.

What is peace? Peace is knowing that yes your health may get worse or it may get better or it may stay the same. Peace is accepting that you may die next week or you may die in ten years, but that at some point you will die. Peace is being able to say to yourself these are just thoughts I am having and I do not need to cause my body extra anxiety right now. Peace is being able to say that right now I am OK and right now I will do what I need to do. Peace is being able to acknowledge when the right now is not OK and accept what it is, while also doing what you need to do to in order to address the immediate problem. Peace is understanding the difference between thoughts and your actual presence in the moment. Peace is being able to allow your body to physiologically react and to have emotions only in response to what is happening right now.

So how does one find peace? Hard work. Thoughts need to be redirected. It takes some practice but it goes something like this: when you start to get anxious, remind yourself that you are just having thoughts and refocus on your immediate surroundings. Pay attention to who you are within the moment, what you need to do right now, all the different things in the room or environment you are in, the colors, the tastes, smells, and sounds in the present. Question how the thoughts about potential futures serve you. Trust in your ability to make a plan and cope with a difficult situation if and when it happens, rather than wasting time creating a plan that may never need to be implemented. Lastly, remind yourself that who knows what tomorrow brings; all you have is now. Be it. Be the now, whatever it may be....life that's what it is.

The "I"

"I am so tired. I am in so much pain. I can't stand it anymore. When will I get better? I feel so sick." Beginning at a very young age human beings learn to distinguish themselves as separate from everyone else. A sense of "I" develops and an ego forms. Senses become associated with who one is-- the self. Feeling becomes, "I feel." Hurting becomes "I hurt." An illusion is created that these senses are the self...the person.

It is easy to understand how this occurs. After all the person standing across from you is not the one feeling the pain you are feeling. You are feeling it so it seems like it is part of you. It is...it is your experience but it is not the same as being you. It requires great care to be able to maintain a line of separation between what one's senses are and who his/her self really is. One may feel pain but one is not pain but rather a person experiencing it.

For folks living with chronic physical illnesses, it can sometimes be a struggle to not lose sight of who the self is. The body may feel broken but that does not mean you are broken. I do not want to minimize any of the discomfort, pain or suffering that a person living with a chronic illness may experience. I do want to acknowledge that these sensations do not have to define a person. All human life is a series of sensations and experiences but that is not what separates us from each other...we are all the same in this way. Our differences, our uniqueness, our "I" lies in how we live given the sensations or experiences we are dealt in life.

Who are you?

Why is Everything so Annoying?

Ever wake up angry about silly little things or really anxious about aspects of your environment that are unpredictable or uncontrollable? It can drive you crazy. Why is it suddenly so frustrating that your boss eats a smelly sandwich everyday during a board meeting? Is this really something to feel such intense anger about? Is your extreme anxiety about whether or not you will be having drinks with friends tonight actually warranted? What is going on?

Did you ever notice that anger and anxiety about everyday things intensify when you are not feeling well? Have you also noticed that the less you talk about the feelings of unpredictability, uncontrollability, and fear that come with your symptoms or your illness, the more you experience anger and anxiety regarding other things in your life? Sure your boss may be annoying or certain things friends do may irritate you, but why are the feelings so intense? What is occurring is what psychologists call displacement. Displacement is a common defense mechanism where broadly speaking unwanted emotions stemming from anxiety producing situations are put onto more benign situations. So one with a chronic illness may be feeling extremely angry that after months of remission incapacitating symptoms have returned.  Acknowledging this may cause too much anxiety for the person and therefore the person may become extremely angry at something his or her spouse does instead.  Although there may be some real annoyance at the spouse, the anger is really not about the spouse. The underlying anger is actually about the experience of living with the illness.

Sometimes people come to an understanding of what their feelings are actually about but oftentimes they usually need help from others who point it out to them. After all if it was something easy for the person to acknowledge s/he wouldn't need the defense in the first place. Talking about the emotions that follow living with a chronic physical illness can be a very difficult thing to do. However, the benefits do outweigh the costs. Think about it. What will it be like if all the anger, anxiety, sadness, and other emotions stemming from living with an illness get displaced onto various relationships in one's environment? It can cause some serious problems with people's support networks, jobs, and home life. People who live with chronic illness do not need any additional stress; they need positive and functional relationships. Talking with loved ones about the emotions that living with a chronic physical illness bring up can actually make relationships with loved ones even more fulfilling and intimate. One doesn't have to feel alone with his or her emotions.

There are times when people in your life may have a hard time understanding your experience of living with a chronic physical illness. That does not mean your feelings are invalid or that you are being "dramatic." It just means that for whatever reason the person you are talking to is incapable of understanding you at a given moment(s). This does not mean you need to revert back to avoiding talking about your anger, anxiety, fear of uncontrollability, or unpredictability, it just means that you need to find somebody else to talk to. Support groups and psychologists are places where your feelings will be heard. You will see...the more you talk about the core source of your emotions the less you'll be feeling like if your boss eats a smelly sandwich at the board meeting you might need to punch him. Let it out. You do not have to be alone.

Trauma and ReTrauma: A Painful Cycle

Adjustment. Time. These are the necessary components for processing the reality of living with a chronic physical illness. Following the diagnosis of a chronic illness, it can take a while for a person to come to terms with the fact that his or her life will change in some way, big or small . This period of adjustment can at times be painful. For some it can take months or even years, but eventually many people find a way to successfully live despite their illness.

Pre-diagnosis, initial diagnosis, and learning to cope with a chronic illness is an experience of trauma all in itself. A person comes to face many existential issues that otherwise would have remained in a position of denial until a much later time in life. Fragility of the human body, mortality, renegotiation of interpersonal relationships, changes in career and daily life, among many other constituents are confronted. This is a lot to cope with but it happens. Human resiliency finds some way to manage the chaos that comes with a new medical diagnosis.

Sometimes people even enter a period of partial or full remission. This is a blessing. During a period of remission, one can even forget all the difficulties encountered during the active phase of the illness, as well as the complex psychological experiences that came along with it. Much of the trauma encountered during that active phase of the illness is left behind and an emotional healing parallels that of the physical.

Then the relapse bomb hits.... Trauma all over again. One visits his or her doctor and hears, "I am sorry but your body is acting up again." The person sits their thinking, "but I thought I had it all under control" ... and then the person is reminded "oh yeah, what control?" The chaos sets back in as the person recalls all of the initial trauma lived when s/he was  originally diagnosed. The person remembers that control is only an illusion that humans hold on to in order to feel comforted, but that we only have very little of. The person is reminded of the adjustments that need to be made in his or her environment because of the fragility of the body, and begins to sift through memories of discussions that were and need to again be had with important people in his/her life.

Coping. Coping is not something that happens only during an initial active phase of a chronic illness. The word "chronic" in "chronic illness" tells us that it is something that is going to have to be dealt with long term. What happens when one stops actively coping with an illness during a period of remission is that one can be overcome with illusions and denial, as if the person was never diagnosed. This makes sense. Who wants to remember a trauma? Any trauma. It is like asking a person to recall a horrible car accident. However when traumatic events are pushed out of conscious processing they still remain somewhere in the unconscious and are stored in our memory within our bodies and brains. It does not disappear. And if a relapse bomb hits, an unprocessed trauma will be much more difficult to cope with than a consciously processed trauma. Either way, a relapse can be a very retraumatizing experience. One has to deal with many issues that come up again that one thought s/he had already dealt with.  That is why it is important to explore all the concerns that arose following a diagnosis of a chronic illness even after a period of remission.

... But that's the illusion of control speaking through me in the moment. We do have a bit of control and that is the part of the person that tries to prepare for the next trauma....the retrauma.  However, one really never knows what it is going to feel like when that retraumatizing moment occurs. The most important thing is to consciously process it. Get it out of your mind and your body as much as possible by putting it into words. Take some of the power away from the overwhelming emotions and put it back into your hands but putting the emotions into words that then come out of your mouth and outside of your body.  Rebegin the process of adjustment and time. Continue with that chronic cycle...the at times chronic painful cycle. You did it once, you can do it again. Find your life with the quality that fits just right for you and your needs. Adjustment. Time.

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!