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!

Matters of the Heart

For many years it was largely assumed that a Type A personality, anger or hostility was related to onset of heart disease. However, empirical research has found that the relationship between heart disease and Type A personality is quite complicated and that the impact of hostility on the development of heart disease is at best weak (Marks, Murray, Evans, Willig, Woodall, & Sykes, 2006). Generally, there is much less heard about Type A behaviors, hostility or anger in those who have already survived and live with heart disease. This is unfortunate as there are multiple factors that can contribute to the emergence of feelings of hostility or anger when living with heart disease. For example, a person who has just undergone cardiac surgery may be experiencing excruciating pain. This person's ribs may have had to be broken in order for the surgery to be performed, arteries from other parts of this person's body may have been moved in order to replace damaged arteries. It is extremely difficult to imagine this person not being at the very least a bit angry about what his or her body has had to go through. This is only one scenario. Imagine another person, who happens to have a Type A personality but whose activities are significantly limited because of a heart condition. This person might be furious that running a marathon, doing all the house chores, and working long hours is no longer an option...talk about lifestyle changes! There are numerous examples and I am sure others can include additional ones but something that is certainly painful and that cannot be avoided is the meaning associated with damage to one's heart.

Many ancient traditions believed that the heart is the seat of the soul, and held the heart in higher esteem than the brain or mind, which most modern day westerners do not do. However, even modern day westerners think of the heart when they think of life. It is the organ that pumps vital blood throughout our body that keeps the body and the brain living. Similar to older traditions, most modern communities acknowledge the heart as the origin of love. Even little children draw pictures of hearts when they think of love. Damage to any vital organ of our bodies is likely to create anger, pain, frustration, or a need to exert control. However, the heart is the only organ that has all of these transcultural and transgenerational meanings attached to it. Literally one's heart is "broken" or "hurt" or "damaged," and it may feel completely out of one's control. Yes maybe one could have smoked less, ate healthier, or exercised more, but then there are just some who have heart disease running in their family and could not avoid it despite being pinnacles of health. Regardless of the contributing factors, nobody asked for a broken heart.

Similar to an emotionally "broken heart," sometimes people who live with heart disease may feel like nobody understands their pain. They may want to be "left alone" and at times can become depressed. They may feel a need to try to micromanage or control whatever they can on their own without help from others, much like someone who has been let down by another person--except this time their own body has let them down and hurt their hearts. It may become easy to want to protect one's own heart from any more pain, to close it up, which may even manifest physically by slouching and sinking one's heart into the chest rather than standing up straight and showing one's heart to the world.

This sounds sad, but it does not have to be. Think about people who have had their hearts broken by others, became depressed and sad, and even angry. Many of these people a few years later or maybe even sooner are the happiest they have ever been and in loving relationships, perhaps with others but most importantly with themselves. Yes, there are other people who have had their hearts broken and have never seemed able to recover but that is a choice guided by fear...fear of standing up straight again and showing one's heart to the world; heart emotionally but also heart physically.

Emotions and the body are not so disconnected as it is easy to sometimes believe. There are reasons why meanings of love and life have been attributed to the heart. Sometimes a way to get to an emotional place that you'd like to be is through the physical. As discussed above the physical can certainly negatively impact one's emotional state but it can ALSO do the opposite. Ok, so your body has let you down, your heart hurts and is in pain...what are you going to do about it? Will you live in fear of feeling pain again, hiding your heart deep within the cavity of your chest, or will you stand up tall and say I love you to life...even if sometimes it hurts. Maybe you can try to make some physical changes (CHECK WITH YOUR DOCTOR FIRST)such as engaging in certain yoga poses that focus on opening up the chest area. For something less physically rigorous, try some reiki or meditation on the heart. If approved by your doctor even try or some aerobic activity, such as running, dancing, or swimming. Physical changes can also include behaviors like singing, which involves breathing through the belly and chest and brings fresh life giving oxygen to the heart. One can also read poetry that invokes loving emotions. There are many options.

I do not think anyone would suggest that it is not ok to feel angry, sad, or at times even want to isolate yourself. These emotions are ok as long as they do not take over. Anything extreme is usually never a good thing but all in moderation is not so bad. Surviving and living with heart disease can be a traumatizing and terrifying experience, and one has a right to feel whatever he or she feels about it. The question remaining though is, will you be that person who never gets over one's lost love or will you be the person who after experiencing a lost love eventually finds happiness like never before? Remember your heart may have been broken, but your heart--YOU are still alive.

Marks,D.F.,Murray,M.,Evans,B.,Willig,C.,Woodall,C.,& Sykes, C.M. (2006). Health psychology: Theory, research & practice (2nd ed). New York: Sage.

Everyone Gets Tired...But Not Like This

Lupus...some people know what it is, most people don't. People may listen and probably understand when they hear the words, "chronic autoimmune disease" or "there is no cure." However, do people really comprehend what it is like to live with lupus? Part of the struggle of living with lupus is making what the experience of living with lupus is clear to others, such as partners, family, and employers. Perhaps others have little difficulty grasping the seriousness of organ involvement, or the tangibility of skin damage; however what do others think about two of the most common lupus symptoms: fatigue and joint pain?

Most people living with lupus are diagnosed during childbearing years...in their prime where they want to be active and have jobs. Typically people living with lupus do not look any different from people who do not have lupus. It is hard to tell that there is an illness present; however, people with lupus may feel chronically exhausted, fatigued, and in a lot of pain. Sometimes the fatigue is so great that it is a tremendous effort to walk from one's couch to the bathroom or it is difficult to think clearly. People without lupus have no way to know how a person living with lupus feels, unless it is communicated to them--this can be frustrating!

With many other chronic illnesses, it is obvious that the person is suffering, but with lupus this is not always the case. Imagine a young, seemingly healthy 30 something year old woman who has a full time job that she really enjoys. This woman also lives with lupus. She has been feeling ok for awhile but for the last two weeks her joints have been hurting greatly and she feels exhausted. She wants to take a few days off and rest but is afraid of what her boss might think. Thoughts of what her boss could be thinking run through her mind such as, "she doesn't look sick" or "she wants to go home because she is tired...so what? Everyone gets tired." This woman who suffers from this extreme fatigue may feel that her symptoms are illegitimate or may feel ashamed to ask for time off because of them. She may or may not speak to her boss. She may choose not to speak to her boss and continue to suffer, contributing to feeling even more exhausted at the end of the day. On the other hand, she may decide to speak to her boss and feel ashamed or frustrated at her boss' lack of understanding and dismissal of her pain, which may deter her from speaking up again. The outcomes of these options seem quite grim; however there is another scenario. In an act of self-care, this woman can speak to her employer and if her employer does not understand, she can provide her employer with some educational literature, and if the employer still does not understand, she can remind the employer that according to the Americans with Disabilities Act, employers are required to make reasonable accommodations to permit people with disabilities to be employed. Hopefully this woman and the employer can then work something out.

There are many practical solutions to scenarios such as the one described above. However, the more significant issue is how this young lady must feel having to justify her symptoms...her experience...the fatigue that is very real to her but which she may believe that she has to prove. People may think, "everyone gets tired" but most people have no idea just how debilitating lupus fatigue can be. It can be a challenge for those living with lupus to shed any feelings of embarrassment or shame regarding their fatigue or pain, and to boldly request their needs. All people want to be understood by others, lupus or no lupus. People living with lupus are constantly learning the they need to speak up to have their experiences of exhaustion and pain fully understood. It is not always easy, especially when others do not seem to understand and some may want to give up. Hopefully someone will remind that lupus fatigue is a legitimate experience and that having special needs or requests is justified! I hope I just reminded you to take care of yourself as best as you can.

Most people know very little about lupus and autoimmune diseases in general. The millions of people living with these illnesses need advocates. Get involved! Donate to research to help find a cure, or help spread the word and educate the general public.

Double Illness Double Trouble

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

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

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

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

Not Lucky to Have and Illness but Lucky to Have a Diagnosis...What?!?

Living with a chronic physical illness is living with uncertainty (when will the symptoms strike, will I remain stable, how will this impact my life goals?). One thing that is certain is that a diagnosis has been named that can change one's life forever. What if the diagnosis was also uncertain? What does one grasp on to?

Not all chronic illnesses are easy to diagnose. Many people suffer with debilitating symptoms for years before doctors are able to provide them with any answers. For example, people may be struggling with an autoimmune disease for six, seven, even ten years without anyone being able to identify the disease or provide appropriate treatment for it. It is easy to imagine how devastating it is to receive a diagnosis of any chronic illness, but harder to think about how lucky one is to pinpoint what the problem is early on.

One big red butterfly rash on the face and immediately one is clued into Lupus as the culprit. A big rash--its not exactly the most pleasant thing, but now it is known and medication and treatment can begin in hopes of preventing additional tissue damage. What if that rash never came? Maybe a diagnosis could be made with history, blood work, clinical symptoms...maybe not. Besides the damage that could be occurring in the body, imagine the uncertainty of not knowing what is happening in one's own body. "Why is my body doing these things? Why am I in pain? Why am I so tired? Why did my legs stop working? What will happen to me? Am I going to die?" The answer is "nobody knows." How terrifying is that?

Living with a chronic physical illness is a tremendous challenge regardless of whether or not there is a diagnosis. It is not fair, it is at times uncontrollable, and it is suffering. It takes enormous strength to adapt and to continue to live well. Staying positive can be a challenge. So it might sound insensitive or odd to say that one is lucky to have a diagnosis. One is NOT lucky to have an illness but to be able to name what that illness is opens the door for answers, for treatment, for health, and for understanding. To be ill and to not know why or what it is is even more frightening.

It is easy for people..all people, chronic illness or not, ...to get stuck in their own heads, their own worlds, their own suffering and to feel like there is nothing else going on in the world. This can become isolating and counterproductive. Never down play your own journey, your own strife, or your own pain. Share your experience and do not allow yourself to be alone. Hear the suffering of others. Let them share and feel that they are not alone either. Be careful not to forget the things that you are lucky to have, that could have been worse, and that are worse for others.

The Irony...Healthier Living with a Chronic Illness

What does being healthy mean? Can one live with a chronic physical illness and be healthy despite the illness? Is one healthy during periods of remission? Does living with a chronic physical illness mean that one cannot be healthy?

The question of health is a complicated one and is a question that many people who live with chronic physical illness face on a regular basis. At times, people living with chronic physical illness may want to forget that they have health related issues to deal with that other folks in their lives do not. In fact some people with chronic illness do forget about their health concerns until something happens to remind them. There could be days or weeks, months or years of remission when a person with chronic physical illness experiences him or her self as illness-free and completely healthy. But what happens when people who are living with an illness experience a day of suffering, when symptoms are rampant? A day like this can happen on a regular work day, in a moment riddled with responsibilities, and can be a forceful reminder that the illness is there. Days like this can really make some people confront what is truly important in their lives. It can make one question, "life is short so, do I have to have this particular job" or "if I am suffering, shouldn't I really enjoy my responsibilities rather than suffer through something I don't even care about?" Many questions may come up about how one is living his or her life. Some people may even think about the future generation. For example, a woman who wants to be a mother, living with an illness that makes it likely that pregnancy will be a high risk, may question how well she is preparing her body for a baby. Her future desire for wanting to be a mother may be so much more important to her than her immediate responsibilities, that she may choose to rearrange her life in the present in hopes of making the future outcome that she longs for more likely.

Some may question what all these examples have to do with health. For thousands of years humans have defined health in a myriad of ways. The ancient Greeks believed that health was achieved when there was a balance of four bodily fluids. There are certain African tribes that currently believe that health is a balance between the physical and spiritual, including making peace with spirits of dead ancestors. It is only the recent Western definition of health, which limits the understanding of health as being equivalent to the absence of illness. According to this modern and medicalized understanding of health, those living with a chronic physical illness are technically not 100% healthy. However, thinking about health in a broader light makes it possible to see that actually being diagnosed with a chronic physical illness may serve as a catalyst for a certain level of health that would never otherwise have been achieved. The presence of physical suffering is a reminder that our bodies cannot sustain life forever, that we have a limited amount of time on this earth, and this can serve as the strongest motivator for choosing to live the rest of your life making the right decisions--the healthiest decisions. Some may realize that they neglected their innate passions and talents to work a job that pays the bills but brings no satisfaction. Others may realize that the stress of professional success may put such a strain on their bodies that pregnancy will be extremely difficult. There could be people who realized that they have spent too much energy caring about what other people think about their lives rather than taking the time to decide for themselves what is important to them for their lives. Yes having a non-ill physical body means being healthy. However, health is also recognizing what you love, what will make you happy, and how you really want to spend the short time that you have on this planet. Health is being able to walk away from something that you do not particularly care about so that you can move towards what really matters to you. Health is about not caring about what others will think and having faith that those who truly matter will support you in your decisions. Health is being able to come to peace with the limitations that your illness has imposed onto to your life and using these limitations to really hone in on what matters most. If you can only do a few out of the many things that you had intended for, figure out which you really want to do...and go for it! That is health! Steve Jobs had pancreatic cancer and a liver transplant, and died too young; however, he was probably one of the healthiest men of the century.

"Almost everything--all external expectations, all pride, all fear of embarrassment or failure--these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart." (Steve Jobs)

Emotional? Physical Feelings? Both? Confused!

"I am so angry! This person just irritates me so much. I don't know why! He just does."

"I feel so sad today. I think I'm unhappy with my job or maybe I am unhappy with myself...I am not really sure."

"I just feel so depressed and I don't know why."

It is not uncommon for people who live with chronic physical illness to at times experience unwanted emotions (e.g. anger, sadness, depression) and to be unsure about where these feelings came from. Sometimes the person is able to identify the cause of their emotion and other times the person may remain very confused about their experience. Oftentimes, one thing that people who live with chronic physical illness are not uncertain about is their physical pain or discomfort. For example, one can identify pain in the muscles, or a headache, or complete exhaustion. So how are these two things related? Emotional pain and physical pain...are they so seperate after all?

It takes up a lot of emotional energy when a person who lives with a chronic physical illness suffers or hurts physically. The pain may be felt in a physical body part such as a chest or a kidney but that physical body part is also a part of the entire human. There will certainly be some emotional reaction to the symptom even if the person has experienced the same symptoms thousands of times. A person can think to him or her self with ease, "I know what I am feeling right now. It is my ____ acting up." However, intellectual understanding does not necessarily negate emotional feeling. Even if a person has experienced this symptom numerous times it may make him or her furious that he or she needs to deal with this regularly or maybe very sad about the limitations it imposes on his or her life. It is easy to ignore these feelings in the service of a "I am used to this, life goes on" attitude, but these feelings will not just disappear; they will express themselves in one way or another. For example, one's anger about having to deal with the illness symptoms may be displaced onto a coworker who suddenly irritates the person to no degree for absolutely no reason, or a piece of constructive criticism at work causes one to break down in tears, masking the underlying sadness about the chronic illness. Displacement of the feelings of one's suffering onto something else in the person's life can leave the person feeling very confused and disillusioned.

It is sometimes not easy for a person to really admit to him or her self that the physical symptoms of his or her illness are causing emotional reactions. People may think "this darn illness is hurting my body and now its causing me emotional pain too!" Some people may feel that admitting to the emotional effects of the physical illness is letting the illness "get the best of them." However, in a way the opposite is true. If feelings are not acknowledged and directly and appropriately expressed, they will find a way to manifest...usually in a displaced way. It may be difficult but it is worth the struggle to get to the point where one is able to say, "I am angry because I hurt so much today" or "I am really sad that I can't run like I used to" or "I am depressed that I cannot be there for my kids in the way that I really want to be." Sometimes one may need to seek professional help, as this process of acknowledging how the physical and the emotional dance together as one can be very difficult.

People can ignore the holistic nature of being human...the interconnection of physical and emotional; however, pretending that a duality between body and mind exist does not in fact create such a duality. The feelings will still be there and if expressed inappropriately and in a displaced manner may cause more confusion and problems for people than would have resulted from the acknowledgment of the feelings stemming from the physical illness. Yes it is not always an easy task as these feelings may oftentimes not even be conscious as they can be so painful. It is important to seek professional help if you see that your emotions have been causing problems in your life, your social relationships, or your job since you have been diagnosed with your illness. Maybe you do not have to remain confused.

Self-Doubt: An Affliction that Grows...Unless you Stop It!

Doubt...everyone has experienced doubt at some point in his or her life. One may doubt the existence of god, one may have doubted the loyalty of a friend, or the likelihood of a promotion. People also experience self-doubt at various times throughout their lives. Self-doubt is not a foreign concept to most; however, self-doubt can take on a more powerful and frequently present role in the lives of people who live with chronic physical illness, and can trigger old and long forgotten insecurities from the past.

Imagine what it could be like. A person may have felt confident in their abilities to perform the duties of his or her profession competently, as he or she has for a great number of years. Suddenly there are these physical symptoms that may make it difficult to complete tasks that were like second nature in the past. It is not unreasonable when one then starts to question, "can I accomplish my life goals" or in the immediate future, "will I be able to get through work, chores, or family obligations today?"

Self-doubt is a tricky and slippery affliction. It can spread quickly from one aspect of a person's life to others. For example if a person's physical symptoms have made it necessary to alter one's work routine, that person may quickly start to wonder, "well if I can no longer perform in this area of my life in the manner that I used to, maybe I wont be able to do X anymore either." An "I can't" mentality can sprout, sprinkling seeds of self-doubt throughout one's mind. The challenge is to attempt to persevere even in the face of self-doubt. Yes, one may be feeling doubtful of certain abilities, but that does not have to stop one from trying. Think about where the self-doubt comes from. Perhaps a job or an activity had to be altered to meet some new needs but how does that suddenly become generalized to all tasks in life? Is it possible to wonder whether or not these generalized feelings of self-doubt are unresolved insecurities from the past, triggered by some new alterations in life? Maybe some of the present feelings of self-doubt are familiar. The "I cant" may be coming from the very real challenges that are presently being faced due to living with a chronic illness, but it may also be activating experiences from childhood or adolescence where self-doubt was prominent. It may not even be a specific memory but a familiar feeling, a similar reaction in the body.

When experiencing self-doubt--the affliction that has the power to grow and grow, it is important to make time to sit down and reflect on where the doubt is coming from. At the same time one should engage in action--trying out the doubted ability. It will be surprising to experience how much one is actually capable of even when his or her mind believes the opposite. If you can no longer do things in the same way that you used to, it is important to try not be discouraged . Some things will change but others will not...do not generalize the outcome of some things to mean the outcome of all.

Self-doubt has the power to grow but it does not have to be an affliction that grows if you do not allow it to. Challenge yourself! Will you sit back and allow the weeds of the "I can't" mentality suffocate you with self-doubt; or will you deeply reflect on where this doubt is coming from, accept the changes that have had to be made in your life, and challenge yourself to achieve as many of your goals possible?

Begin Living ...

Is it easy to imagine a time when you worked most hours of your day, pushing through pain and discomfort because it was what you were "supposed to do"? Likely this occurred before receiving a chronic illness diagnosis. It may have been so easy to think, "my body just hurts because I am tired" or "you're just sleepy" or "don't be lazy." It is almost as if we are programmed to believe that life means doing, doing, doing, and more doing. Many people "live" or rather non-live in this way. Even many people who have a chronic physical illness, prior to receiving a diagnosis, ignored their symptoms in an effort to keep on doing, and some folks keep this up even after receiving a diagnosis. Most of the time people keep themselves excessively busy to avoid acknowledging that that every day lived is another day closer to death. However, when living with chronic physical illness, there comes a point when the body says STOP DOING and BEGIN LIVING!

For some people, receiving their diagnosis is the catalyst for really thinking about death and how things are not forever. Of course there are people who have seriously thought about death before depending on life circumstances or the age which one was when diagnosed. Nevertheless, many people who are diagnosed with a chronic physical illness are in the prime of their lives, or are children, or simply were always too busy doing to ever really think about the precious,time-limited, and fragile nature of life. This can be quite daunting and can paralyze some, thrusting them into an experience of depression, dominated by thoughts such as, "everything is meaningless since we all die anyway" or "I am not going to be cured so what's the point of doing anything." This state and these thoughts are not really that different from the position of DOING DOING DOING. In both experiences of constant doing and perpetual depression people are likely avoiding LIVING. Feelings, experiences, sensations...LIFE is ignored.

Sometimes after struggling with the news of a chronic illness diagnosis, another state may emerge--A LIVING STATE! People may start to think, "life is so precious and I really value it" or "I have such little time, what do I really want to do with this time." People accept that death is inevitable but rather than become defeated by this reality, begin living. Maybe that means coming to a realization that you do not want to be working 60 hours a week but rather only 35 hours a week so as to use the rest of the time to rest, spend it with family, or simply go for quiet walks. Others may begin to perceive the beauties of our world in a way that they had been blind to before. For example, do you ever notice how many different birds fly around you in a given moment or the different materials the people around you are wearing, or really taste all the different flavors of the food you eat, or intimately get to know other people's feelings? These examples are just a speck of what living is.

Living does not mean blindly doing to fill your time to the point that life passes you by and you do not even know how it came and went so fast. Living does not mean sitting at home feeling sorry for yourself and passively waiting for something external to take away your pain. Living is acknowledging your own individual limitations on what you can do, choosing very carefully what is most meaningful to you within your personal limitations, and actively engaging in your everyday moments and tasks by really perceiving what it feels like every step of the way. Even if you are confined to your home because of your illness, you can still engage in life. You can work from home via computer or phone, you can have visitors come to you, you can surround yourself with decorations, flowers, music or anything else that is pleasing to your senses, you can get to intimately know your feelings and the feelings of others...you can live.

One of the most dangerous myths, extremely powerful in this century is that excessive stimulation is living...excessive working, partying, sex, drinking, smoking, thrill-seeking. These are just distractions that numb you from really feeling life. Excessively stimulation is really non-living--an avoidance of the reality that with life comes death. Engage in what is meaningful to you in moderation so you can actually feel what it is that you are partaking in. Really think about why you want to do something and whether or not you truly want to or are just trying to dull a feeling. When you are ready, begin living...just don't wait too long because life might pass you by.

Regression or Reinvention?

Being diagnosed with a chronic physical illness certainly changes people's lives. Depending on many factors (e.g. the age one is when diagnosed, how much adjustment is required in order to deal on a daily basis with the illness, how much support one has, what the treatment requires of the person), one may put a halt on certain academic, professional, or social progress. Progress...it can mean many things. Not only may external aspects of one's life seem to reach hiatus, but being diagnosed with a chronic physical illness can at times follow with an experience of internal, emotional, or psychological plateau, regardless of one's age or position in life. For example, there are some people who have experienced themselves as largely independent of their parents, have made their own decisions for years, and have felt that they are fully capable and functioning adults, and suddenly they find themselves feeling very similar to what it was like when they were adolescents or even children. Old dependencies may re-emerge. Some may not like this encore of early life, fighting it tooth and nail, while others may fully embrace and welcome it without any seeming conflict around it. This is only one of many examples of how being diagnosed with a chronic physical illness can create the experience of a regression to one's past ways of being.

Broadly speaking, regression means retreating to ways of being from an earlier stage of development. There are many events that can occur after being diagnosed with chronic physical illness, which can look like regression. For example, not being able to work as many hours or at all, taking a break from one's studies, needing to speak with one's parents much more frequently, becoming emotional over things that have not upset you in years, engaging in comforting bad habits that you had quit years ago, among others. Sometimes people do regress and that is not necessarily a bad thing. Being diagnosed with a chronic physical illness can be a traumatic event and sometimes the best a person can do to cope temporarily is to experience some comforts from regressive acts. However, many people are resilient and have enough of what is called, ego strength (i.e. the ability to effectively cope with the demands of life) to eventually exit this period of regression and to actually make use of the regression as an opportunity to reinvent the trajectory that they had envisioned for their lives.

There is a difference between people who lose hope when being diagnosed with a chronic physical illness and decide that there is no more opportunities for them to have satisfying independent lives with their own goals, and those who temporarily regress to cope while working on reinventing themselves. Of course the former can become the latter as change is always possible, and if you find yourself in the former group, you may consider talking to a professional and seeking some help. The others who use regression to reinvent at some point recognize that the necessary changes that have to be made might not be so bad after all. People may start to realize that they needed to regress as a period of rest and reflection--an open space that allows fresh ideas, desires, drives, and motivations to emerge, and are now ready to move on. One may think, "OK so I can't do the same job that I have done my entire life, but I always wanted to open my own business, with flexible hours that I determine." Or on a more internal note, "I have always placed so much value on my appearance and my body. Now my body looks completely different from what I always considered beautiful but surprisingly i have come to appreciate what is really beautiful about me. I found a new sense of self worth, and aspects of myself that I seemed to have neglected because I was too focused on my appearance."

Reinventing one's life could be anything and is specific to each person. The important thing is that reinvention occurs. Regression, like all defense mechanisms, is not a bad thing. Defense mechanisms are there to help us cope. It is only when they are under or overused that they become a problem. Sometimes it can be frustrating to find yourself or your loved one who is living with a chronic physical illness in a regressed state. It is important to think about how long has the regressed state lasted, how long ago was the diagnosis of the illness made, are small changes in the person's life being made, ect...? The person might just be in the process of reflecting and reinventing. Give it some time and see, and if you find yourself or your loved one stuck in a regressed place seek professional help in an effort to kick start the process of reinvention. I have heard many people say how they would never wish their illness on anyone but having an illness has made them realize certain things about themselves and their lives that they never would have otherwise.

According to Buddhist thought, existing in a world of dualities, where things are either good or bad, is part of what causes human suffering. Nothing is either or but rather everything is everything. A wolf can be a big and scary creature but it is also cuddly, playful, and maternal if you reinvent what aspects of it you choose to see. Your illness can be bad, destructive or traumatizing, but it can also bring you wisdom, opportunity for growth, a sense of generosity towards others, a feeling of acceptance, and a greater tolerance for unpredictability. Its all of this and more. What aspects you wish to hold onto...your choice.

The Value of Human Experience

While listening to people who live with chronic physical illness, one may occasionally hear the following, "I have diabetes" or "I have RSD" or "I have MS" or "I have lupus." However much more often one is likely to hear, "I have this horrible pain" or "I just feel tired all the time" or "it is a tremendous effort to just get out of bed and take a shower."

When people speak about chronic physical illness, they are usually detailing their phenomenological experience...what it is like for them to live with whatever illness they may have. Those descriptions of what they live through are incredibly meaningful...just as important as the diagnosis itself and at times perhaps even more. A diagnosis can inform a doctor of what to do, what to prescribe, and what the course of the illness is likely to be. Yes this is very important. The diagnosis also legitimizes a person's occasional difficulty engaging in certain activities or going to work. However sometimes the diagnosis, the label, which is simply a label that identifies a cluster of symptoms, overshadows the experience of what these symptoms are like for a person. This can be dangerous.

It is very easy to say, "well there is no cause for my experience so it must be psychosomatic...the end." Well...firstly, just because a physical cause for a set of symptoms has not been found does not mean that one does not exist, and second, even if it is psychosomatic that does not negate that a person is actually experiencing a set of physical symptoms that to them are certainly real.

People may become very frustrated with their experience of having symptoms when there is no way of knowing why these symptoms exist. Sometimes people in this situation begin to blame themselves for "creating the symptoms in their minds", or become depressed because they feel helpless to treat or alleviate their symptoms, or become embarrassed of their experience and push through their suffering in an attempt to hide their pain from others. It is sad that saying, "I feel extremely sick today" is not attributed as much meaning as "I have X illness and I feel extremely sick today."

If we take a moment to really reflect on what is important, it will become apparent that perhaps people's experiences are even more legitimate than the labels that are placed on them. After all, the experience is a direct picture of what it is like to be that person, while the diagnosis--the label--is created by people and placed on other people's experiences in an effort to have a quick way of identifying a cluster of symptoms that a number of people may have. BUT EVEN ONE PERSON'S UNIQUE EXPERIENCE IS MEANINGFUL AND IMPORTANT!!!

For years, many people living with lupus were unable to receive answers for why they experienced such a variable range of symptoms. Even today it is an incredibly difficult illness to diagnose, particularly because there are so many different symptoms and because the course of the illness can be so different in various people. Even today, some people live for years EXPERIENCING symptoms without having a diagnosis. Who knows what new labels may be creating in the future. Regardless of having a diagnosis or not, remember the importance of the experience! So a doctor may say, "I don't know what it is," ok, try another doctor. If a number of doctors say it is psychosomatic, explore that with a mental health professional. A non-diagnosis does not mean that there is no hope for change. What will lead to change is for each individual to discover. Will it be herbal remedies, psychotherapy, meditation, yoga, life changes...? The only way to know is to keep on living, keep on trying, and to never de-legitimize the value and significance of the human experience...your human experience.

Acceptance

My hair is falling out. Acceptance. My body hurts. Acceptance. My joints are swollen. Acceptance. My heart is beating so fast. Acceptance. What are these things on my skin? Acceptance. I am so exhausted. Acceptance. What has happened to me? Acceptance. What has happened to my body? Acceptance. Who am I? Acceptance.

It is really important to check with one's doctor when strange, uncomfortable, or painful symptoms of a chronic illness surface. Sometimes the doctor can help! Other times there is nothing to be done but accept. What a task! People who live with chronic physical illness may at times wonder if they are the same people they were prior to being diagnosed. It is easy to believe that because the body changes the person changes too. This is not true. You are you.

Change is an inevitable part of being human and unfortunately change is not always pleasant. Think about all the things that have changed around you even in just the last year. Even when your body changes, you are still you...although you may feel differently than you did before you had your illness. You may at times be angrier, depressed, or more emotional. These are feelings and your feelings may have changed too as your body changed. Feelings do not equal you. Accept. Accept your feelings, accept the changes that you have no control over and try to find that love for yourself--the self that is still there; the YOU!

Control Over the Uncontrollable

Oxymorons seem to be the norm when discussing chronic physical illness. For example, as discussed in earlier posts, some chronic illnesses are associated with forms of memory loss while at the same time can assist in creating what feels like undying traumatic memories. Other times, some people with certain chronic physical illnesses experience themselves as having had no control over the development of their illness,the course of the illness, or the prognosis; nevertheless, these same people manage to develop a strong sense of control over their lives. There are countless examples demonstrating how the psychological experience of living with a chronic illness is extremely complicated, far from black and white, and full of gray which on the surface seems contradictory but upon reflective examination makes perfect sense.

Lets examine the seemingly ironic control over the uncontrollable. How does a person who lives with chronic physical illness feel a sense of control when at the same time that person describes the development of his or her illness as completely out of his or her control? Quite commonly people who live with chronic physical illness, especially immediately following the receiving of a diagnosis, attempt to compensate for the lack of control over their illness by becoming overly controlling in other areas of their lives. For example, a parent may excessively worry about his or her children and may uneccesarily micromanage every aspect of his or her children's lives. Another person may stay at work longer, keeping all aspects of his or her job in order, and can become extremely anxious if something is out of place, needing to properly put it back in its right place in order to relax.

There are people who are diagnosed with chronic physical illnesses who up until their diagnosis have taken extreme care of their bodies and health. Sometimes these people will say things like, "I don't understand. I did everything right. I exercised and ate healthy." Or if a young person is diagnosed you may hear something like, "but this only happens to old people. And even if people who have been diagnosed did smoke or eat poorly, they may state things such as, "my father smoked for 50 years and he was fine." What all of these people share is the experience of having the feeling of being in control of their lives and of their health become suddenly shattered after receiving their diagnosis. Now how to regain some control? Ok anyone can default to overcompensating and being excessively controlling in other areas of his or her life, which is not necessarily a bad thing and can at times be comforting...but does it really make one feel more empowered? Not really. Fortunately, this is not the only manner in which one who lives with a chronic physical illness can experience control over the uncontrollable.

When first receiving a diagnosis some people may not want to talk about the illness. They may feel embarrassed by it, may not want to depress or bore others with it, may simply want to pretend it does not exist, among other things. This especially makes sense when first being diagnosed because one is in shock and at times in denial, and therefore pushes the realness of the illness away in order to cope. As time passes however, the illness becomes a reality simply by the virtue of its physical existence, symptoms, doctor's appointments, or taking medication. There is a huge experiential inconsistency if the person still cannot talk about the illness, as if there is something fundamentally wrong with him or her for having the illness. Now that gives a lot of power to the illness, doesn't it? Talk about feeling like you do not have any control.

Imagine what it would be like to take some of that power back! Would it be possible to verbally acknoweldge the existence of the illness to others, to describe it to loved ones in a way that communicates "this is part of my life right now and I am explaining it to you so that you can understand"? Ok so now you ackowledge that this is something that you have to live with. Now what can you do to live well? Can you research everything there is to know about what alleviates your symptoms and try them out? Can you interactively communicate with your doctor so that your doctor-patient experience is not just the doctor telling you what to do? Can you not be embarrassed that you have to live with your illness and express to others any accomodations that you might need? You are entitled to accomodations. You have control over all of these things and more. Yes you still cannot control the fact that you have an illness but that does not mean that you cannot control what you choose to do about it. If you experience the illness as playing a power game with you in which it has all the power, then play the game right back and win it by taking control over all the things that you can. Even though it seems like many things, the illness only took control of one thing, and even though it is a big thing do not forget that it is really one thing.

I do not intend to minimize the extent of change that occurs in a person's life after being diagnosed with an illness but I just want to point out how easy it is for our minds to play a trick on us and make us think that control is lost over everything...that is the illness's power game. Changes will occur in your life after being diagnosed with a chronic illness--YOU ARE IN CONTROL OF HOW YOU DEAL WITH THEM...ALL OF THEM (unless you are deemed as lacking capacity to make decisions in which case you probably would not be able to coherently be reading this). The illness is only in control of the fact that you have it. Do not give it any more power than that. You can have control over the uncontrollable!

The Undying Memory

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

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

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

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

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