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.

Pain's Life? No My Life!

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

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

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

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

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

Memories Lost, Moments Gained

What was the name of the place that I visited at least half a dozen times? You know, what's his name...the guy...its on the tip of my tongue. I think his name was Mark, no Mario, no Martin...yes Martin. What I ate for lunch yesterday....I don't know.

Some chronic illnesses, such as Multiple Sclerosis, are associated with various types of memory impairments or loss. Some illnesses may make it hard for people to retrieve stored information, and other illnesses, such as Alzheimer's Disease, may make it difficult to retain newly learned information as well. Depending on the specific chronic illness that a person is living with, the reasons why some people with chronic illnesses may experience memory impairments are not always clearly understood. Forgetting well-rehearsed information or not being able to remember things that you may have just learned can be extremely frustrating, regardless of the source of the memory problems.

It is easy to become upset or even depressed about not being able to recall things that you would have easily been able to in the past. It can feel like you are losing aspects of your life or your self, and it can even be experienced as chaotic at times. Sometimes one may even become so preoccupied with making sure to remember an event that an entire moment, lasting from minutes, sometimes hours or even days, is spent focusing on not losing anymore memories. It makes sense; it is understandable...memories are retained but are any new memories and experiences gained?

Letting go of the fear of forgetting is one of the biggest challenges for people living with chronic illnesses associated with memory loss. It is sad when significant aspects of one's life disappear--temporarily or permanently. However, new experiences are always being made in the moment and you do not want to miss out on them. For example, right now you may be sitting with your beautiful baby niece and maybe you cannot recall what she did the last time you saw her, but you are seeing her now and she is looking at you and smiling. Experience. Life does not end with memory loss, but rather present moments are acknowledged as impermanent, making them potentially appreciated and cherished more than they ever were before.

Today may be forgotten but for today have fun, and since tomorrow you may not remember the happiness of today, recreate joy tomorrow by doing something you really love. You do not need a memory to know what makes you feel good, you just know it, and memory for doing things (like riding a bike) almost never disappear. When a memory is lost, focus on what you can gain...it makes the littlest moment matter. Perhaps every minute of every day would not be so important if you were not so worried about forgetting them. You could just sit, close your eyes and remember all the happy times that you have had. Well if you cannot remember them, then just get up and do what feels good. As for all that practical information that you wish you could remember...write it down. Yes that stuff is important but it makes no difference where it is stored (i.e. brain or blackberry). The present matters. What are you doing right now (besides reading this)? Are you worrying about memories lost or are you gaining a moment?

Sun-kissed

Oh no...summertime! The sun is hot and burning. It is the season for the beach and sun-bathing. It is the time of the year when most people are really excited. Why would anyone say "oh no?" Well, have you ever met anyone who has been diagnosed with lupus?

Lupus is an autoimmune disease that for unknown reasons causes one's immune system to attack the body's own organs. Any of the body's organs may be affected but most often the joints and skin. According to the Lupus Foundation of America, one half to three fourths of people with lupus have adverse reactions to the sun, which may result in an itchy rash, lesions or sores, and which can aggravate other lupus symptoms, such as joint inflammation and fatigue. This adverse reaction, or photosensitivity as it is called, follows from a complex process where the UV rays, primarily UVB rays activates a particular cellular reaction.

Time to gear up to go outside. Here we go: start with at least SPF 70 on your face and entire body. Don't forget to get the areas between your fingers and your feet. Grab that large sombrero-like hat, and find that loose-fitting long-sleeved shirt that you are praying you will not sweat through. You think I am joking? Nope. This is what people who live with lupus have to deal with when the sun is high and mighty, unless they are feeling risky on a certain day, and trust me there are many people who might be feeling risky. And even sometimes one may take all the precautionary steps and they get home at night and--oh darn there is that itching and burning red rashy thing on the little part of my wrist that I did not cover, or maybe even on parts of the body that were covered. Yes this is more than annoying and sometimes the frustration is enough to make one say, "hey I love the feeling of the sun on me and I am going to tan in the middle of the day" or maybe even less extreme, "oh so I forgot to spread the sunscreen on today, no big deal." Sometimes people may just want to forget that they have to deal with this annoying chronic illness and want to enjoy the sun like everyone else.

Initially when one is diagnosed with a chronic illness there is an element of denial. Eventually, most people who have been living with the illness for a while come to accept the changes that have come with the disease. However it is not always so black and white; even people coping with a chronic illness for years may fluctuate between denying the adjustments that their illness requires of them and accepting that they can live a high quality life despite having to deal with a chronic illness. As for lupus, think about it...who should really be sitting in the sun without sunscreen or even with sunscreen if it is midday. We all know about skin cancer and even early age wrinkles. Avoiding direct sunlight does not mean you can never enjoy the sun or the outdoors, but rather you can experience them and well. Options: you can sit and tan at noon for 2 hours and risk a week's worth of suffering or you can cover up, wear a hat, and sit in the sun in the late afternoon and know that the odds of any negative reactions are really low. You can take in all the beautiful surroundings, like the trees or the ocean or the people walking by, and you can feel alive as you observe all the life around you. And if you have lupus, you probably know that sometimes you are still more likely to get tanned faster than everyone else.

You don't need a sun burn, a sun rash, or a sun scar, just get a quick sun-kiss. Allow the sun to kiss your skin and then run away leaving it begging for more. Maybe if the sun is nice and kind to you, you will come back another day and let it kiss you once more. And just like people will treat you the way you allow them to treat you, so will the sun, so protect yourself. At most you will be left with a tiny red mark on your skin; a sign that you were smooching for a little too long. You just have to see this all in a different light... and not U.V.

Thank You Followers

I have recently noticed a few new followers and want to thank you for your interest in my posts. I appreciate all of my followers and welcome any of your thoughts or comments, or anything related that you would like to share. I hope my posts continue to interest you and feel free to contact me if you have any suggestions for topics you would like to see me write about. Thanks again!

Misunderstood

There can be a lot of people in the lives of those who live with chronic illness and yet oftentimes people with chronic illness can feel very lonely. Before being diagnosed with chronic illness many have very active social lives, many friends, and make frequent plans or activities. Sometimes the ability to manage this aspect of one’s life changes drastically when one’s health is compromised. There may be new experiences that a person living with a chronic illness might need to deal with, such as extreme fatigue and pain, frequent doctors’ visits, tedious exercise or dietary regimens, or lots and lots of rest and quiet time. These new and usually unwanted pieces of one’s life take up a lot of space, a lot of a person’s free time, and sometimes their not-so-free time as well. There are moments when someone’s loved ones may not understand the necessary adjustments that have been made and could be offended, feel abandoned, neglected, or dismissed.

At times it can be hard for the person living with the illness to explain to their loved ones why they have been spending less time with them. For example, having to describe to many different people the adjustments made in his or her life as a result of the illness may be a reminder of the illness, that the person may not necessarily want to be reminded of in a given moment or larger time period. Imagine saying over and over “it is not that I don’t want to come out tonight but I am really exhausted and in a lot of pain.” The person suffering from the exhaustion and pain probably feels really bad that they can’t go out and may even feel guilty for not being able to do so, and repeating that over and over to their loved ones could be frustrating. Sometimes people living with a chronic illness may become so tired of repeating the necessity for the adjustments in their life to others that they may just retreat and no longer offer any explanations to others, in hopes that after a certain point it is just understood that their lives have had to drastically change. However, providing information to loved ones about why major changes in one’s social life have occurred does not always mean that loved ones will understand. Regardless of which of the above scenarios is played out, people living with chronic illness can at times feel lonely and misunderstood when their loved ones react to their adjustments with disappointment, hurt, and anger. The life changes that have been made, which certainly affect the person with the illness’ social life are never made to disrupt one’s relationships, but rather are made to help the person with the chronic illness maintain a good quality of life, as much health as possible, and happiness. This may seem selfish, but the alternative may be worse—exhaustion, deterioration of health, and maybe even resentment towards the loved ones who may desire more than it is possible for you to give at a particular time.

To ask one’s loved ones to learn to understand what it is like to live with a chronic illness is a huge undertaking. It is a struggle because the loved ones are not experiencing what the person with the illness is—they can only try their best to know what it is like. Some loved ones will be better at it than others, and some loved ones may not be able to adjust to the adjustments that the person with the illness has had to make, which has affected his or her relationships. All that can be done is communication. Nobody wants to be misunderstood. If you feel ready to try to explain to your loved ones what it is like to be living with your illness and why it has affected your relationships, then it is best to do so. You won’t feel so lonely if your loved ones can understand. If they do not then you accept it, know that the changes that you have made in your life are misunderstood, and hope that at some point they can accept you. More importantly you must accept the changes in your life that have now become part of you.

Lifestyle Changes are Not Transient Phenomena

Oftentimes folks living with a chronic physical illness are forced to make multiple lifestyle changes in order maintain a certain quality of life. For example, some people living with chronic illness experience excessive fatigue and pain, and require extra rest and sleep. Others, because of certain symptoms such as inflammation, or vitamin, hormonal or enzyme imbalances, may have to change their diet. Most of the time, people living with chronic physical illness, benefit greatly from a decrease in their daily levels of stress, and in particular chronic stress. Therefore, sometimes it may be necessary to lessen one’s work hours or take on fewer responsibilities. Although these lifestyle changes, as well as others, do not cure a given illness, they can significantly improve one’s quality of life and occasionally even decrease the frequency of uncomfortable symptoms. Everyone is affected in different ways and it is important for each person to try various things and find what works.

It can be easy for people experiencing the effects of the illness from an outside perspective, such as a person’s family members, spouse, friends, or coworkers to overlook the importance of maintaining these lifestyle changes. Sometimes after seeing a significant improvement in a loved one’s health, some people may want to believe that the illnesses that their loved ones have been coping with are gone. There may be expectations for the person living with the illness to return to his or her previous manner of living. For example, someone may have increased their hours of sleep, decreased some work hours, and incorporated a light exercise regimen or meditation into their weekly schedule. Following these changes, this person may have more energy, less pain, and his or her activity level may resemble his or her level of activity prior to the illness. This person, in addition to his or her loved ones, may be so overjoyed with feeling well that these lifestyle changes may be easily forgotten. Sometimes when people feel better they might want to “take advantage of the time” and try to do a lot of what could not be done when they were not feeling well. Despite the pull for one to use his or her energy to engage in as much as possible, it is important to remember the experience of feeling better came because of one’s choice to take better care of him or herself.

Lifestyle changes are not a one shot deal. Sometimes they are cyclical; when people make them and then feel better, drop them and then feel worse, and pick them up and try them again. However, lifestyle changes are most effective when they are no longer lifestyle changes but rather become lifestyle…period. Even though lifestyle changes can at times remind the person with the illness and their loved ones, of the illness itself, they can also be reminders of control over the illness, active coping, and well-being. What is your lifestyle?

The Fear, the Feared, or the Fearless

Ancient Chinese Shambala philosophy teaches the path of fearless existence—warriorship. Shambala does not promote aggressive war, but rather describes warriorship as not being afraid of being who you are. Part of facing and not running away from who you are is tolerating being the you, who at times may be experienced as not having a sense of security. We all want security: security of shelter, security of relationships, or security of health. What happens when security is not experienced? People become afraid. People fear that things will fall apart and people scramble to change the situation that they are in, until things feel secure once again.

This fear arises when people run away from the internal stability of who they are. Sometimes people forget that being who they are is enough or fear that it will not be enough, and they latch onto external things for security, such as a house and relationships, and even our physical bodies. It is a radical thing to even say that we do not need our physical health. It can be a devastating experience to lose one’s physical health and to live with suffering. However, it is not true that losing your physical health means losing who you are—your self. Who you are is always there. Do not be afraid to be just that. Even if you are living with a chronic physical illness, your core being, your self, is still enough…even if at times it can feel like you are losing your mind.

There is the fear; your experience of being afraid, which can hold you back from contentment and peace or when acknowledged can thrust you into a position of warriorship. There is the feared; not sufficiently satisfying yourself or your loved ones, disappointing, suffering, pain, dying. There is the fearless! The fearless acknowledge their fear and go beyond it.

Chogyam Trungpa (1984) describes a Shambala warrior as someone who is soft and hard at the same time like a wooden cup covered with layers and layers of lacquer. If the cup is dropped the lacquer may crack but the wooden base remains. Our bodies may crack, our minds may crack, but our inner core is solid…if we are not afraid to accept that. How will you use your fear?

Trungpa, C. (1984). Shambala: The sacred path of the warrior. Shambala Publications Inc.: Boston.

Let Go Let Love

People who are in happy relationships enjoy doing things for their romantic partners. Sometimes things as simple as doing the laundry, making a delicious meal, or surprising one with a favorite movie can put a great smile on a partner's face. However, it is important to remember that in healthy relationships, partners do not love each other only for what they do for each other, but rather they love each other because of the people that they are. Yes, what one does is a part of who one is but people are so much more than a list of their actions.

It can be easy to get caught up in what others do for us and what we are "expected" to do for them.What happens when a relationship gets stripped of "do and does" and who one is--their values, beliefs, history, being--simply remains? Sometimes people who live with chronic physical illness get to experience what happens in romantic relationships when they at times cannot "do" for their partners what they are used to "doing" for them. Two people may have interacted with each other for many years in a routine way. For example, both wake up in the morning, one makes breakfast and the other makes the bed, both go to work, and one then prepares dinner, while the other does the laundry. Or take an example not based on chores but rather leisurely activities--every Saturday one partner goes to support the other at a sports event or a musical performance. Having a chronic physical illness can disturb whatever the individual pattern of interacting is for a given couple. Suddenly one partner may have to lay in bed all day, unable to participate in daily tasks or not being well enough to venture out to the weekly sports event. This disruption in the person's sense of agency and alteration of their role within the partnership can evoke many uncomfortable feelings. Some people may feel a sense of disappointment in themselves for not being able to engage in their daily tasks, leaving double the amount of work for their partners. Others may feel guilty for not being able to participate in fun activities with their partners. Some may feel frightened that their partner will stop loving them because their lives have been greatly altered. There is an infinite amount of feelings a person may experience with respects to their relationship with their partner after having to change their daily routines due to chronic illness--these just scratch the surface.

So what happens? Some people living with chronic physical illness find out that maybe the relationship that they are in is not the right one for them. These people may discover that their function as a "doer for" is what has been loved, rather than all of who they are. Sometimes these people may also initially blame themselves for not satisfying their partners enough to keep them around. Hopefully they eventually learn that it is NOT their fault. Nobody wants a chronic illness and nobody wants to feel unable to do things for themselves or their loves ones. In other instances, people experience being loved in a way that they never knew could exist. These people are told that it does not matter whether or not they can do the things they used to do or go to the places that they used to go. They are told that all that matters is that they are alive and that they are with their loved ones. These people see that even though at times it can be frustrating for their partners to take on more responsibility, overall their partners can take pleasure in caring for them. It is easy to forget that caring for a loved one can grant people a sense of satisfaction and happiness that far surpasses the happiness that comes from receiving.

It is important to never belittle the frustration and pain that comes from having to adjust to living with chronic physical illness. It is also important to remember that if you have a chronic illness it is not your fault. Let your loved ones care for you. If you are in a relationship where your partner makes you feel bad about what you are dealing with everyday, then maybe its time to rethink that relationship. You deserve to be loved and cared for, and you will realize that for someone who truly loves you, allowing him or her to care for you is the biggest thing that you can do for them.

Existential Concerns and the Emergence of Wisdom in Young Adults Living with Chronic Illness

Typically people in their early adult years do not think about the health consequences of activities such as flying in an airplane, lying on a beach, having sex, or running on a treadmill. Young adults who live with chronic physical illnesses, however, do. For example, flying in an airplane becomes a risky endeavor for people with illnesses that cause proneness to blood clots. Young people living with lupus need to stay out of the sun, making an enjoyable activity such as lying on a beach an ordeal involving sunscreen, hats, and lots of shade in order to prevent inflammation, rashes, and fatigue. Having sex, for people who have certain chronic physical illnesses can cause fear of spreading the illness or concern of becoming pregnant, which may pose an entire host of health complications. For people who have rheumatic illnesses, running on a treadmill can cause inflammation of the knees or ankles, and severe pain. Whereas it is not until older adulthood that people begin to think about the fragility of the human body and of life, young people who live with chronic physical illness are in a position where thinking about these existential topics may become a regular act.

For many young people living with chronic physical illnesses, a swollen knuckle can set off a series of thoughts. “What if my illness gets worse; what if this is a sign that there is something else wrong; why is my body failing me; why is this happening to me; I am too young to have these symptoms; will I live for just as long as if I didn’t have my illness?” The experience of coming face to face with mortality and with the imperfections of the human body at a young age may at first seem terrifying. Oftentimes people may want to push these thoughts away because they may be too overwhelming or depressing. Other times people may feel that there is no point in thinking about these things if there is nothing that can be done to change them. There are also occasions when people accept the reality that human life is not eternal and that life in the moment is extremely meaningful, and it is embraced in a way that it has never been before. When this occurs, there can be peace.

In his theory of psychosocial development, developmental psychologist and psychoanalyst Erik Erikson described how people pass through a series of stages throughout the lifespan. In each stage the person must negotiate between demands made by others in their environment, society, and their own innate needs, and successful resolution of a stage follows with the attainment of a “virtue.” According to Erikson’s theory, people in their 20’s and early 30’s are usually in a stage where their primary concerns are intimacy versus isolation. The very last stage of this psychosocial theory is integrity versus despair. During this stage people either come to terms with death and make meaning of their life or they are left with a sense of despair. With integrity comes the virtue of wisdom—an ordered understanding of life and relationships. People usually experience this stage when they are over the age of 65.; however, it is possible for young adults who live with chronic illness to achieve “integrity” and “wisdom” at a much younger age than anticipated by Erikson’s theory of psychosocial development. Yes, according to Erikson, if an early stage is not successfully resolved it will impact the resolution of later stages and therefore jumping to the last stage before having time to tackle the earlier ones may pose some problems…but that is for another discussion. The point is that even though daily activities which may pose health consequences for young people living with chronic illness can terrify and depress, and which you would never wish upon anyone, can at times also allow for the emergence of a sense of meaning-making, peace, wisdom, and acceptance far beyond one’s biological years.

Chronic Illness and Attachment

Imagine—you are living with a chronic physical illness or condition for a year or two and you are doing relatively well. You take medication daily, your physical health is stable, and you have never been hospitalized. You read about support groups and ways that you can maintain a good quality of life by eating right and exercising. You never really forget that you have a condition, but after a while you feel that your life can be normal and that everything is going to be ok. You experience months of symptom-free living, you feel good and strong, and you are proud of your healthy lifestyle.

It is possible to imagine how anyone having the experience just described would feel confident in the future of his or her health and secure in the relationships with his or her self, with loved ones, and with the surrounding environment. Somehow it is easy to overlook how the progress of others living with the same illness affects the sense of security and identity just described. It does.

Now imagine that this secure and confident person hears about another individual who has the same chronic illness, and who unexpectedly ends up in the hospital with complications. This person admitted to the hospital was also someone who was doing “relatively well,” who was also stable on medication, and who was maintaining a healthy quality of life. How does hearing this news affect the person who is still functioning quite well despite having a chronic condition? Some could say this person may feel lucky that they are not in the hospital. Others may worry about their comrade. Many may experience fear; a rattling of the security previously felt and a plunge into a chaotic unpredictability. This unknown does not only alter the confidence in one’s health but may also destabilize a previously secure way of relating to one self and others. Attachment theory can help shed light on what occurs when one’s sense of security is threatened.

Attachment theory describes how emotional bonds to others are formed in early childhood between a child and his or her parent. Broadly speaking, when a parent is dependable, consistent, and responsive to a child’s physical and emotional needs, a sense of security develops in the child. Children with secure attachments will be upset when a parent leaves but experience enough confidence in their emotional bonds with their parent that they feel confident that the parent will return, and therefore are able to relax and explore their surrounding environment until they are reunited with the parent. Children whose parent is persistently emotionally unavailable, emotionally overinvolved, rejecting, neglectful, or abusive are likely to develop insecure attachments. These children will either have no interest in a relationship with their parent, or will excessively cling to their parent and become extremely distressed in their parent’s absence. Following these insecurities, these children may feel less comfortable exploring their surrounding environment and new relationships. It is postulated that the attachments formed in early childhood usually persist in later life, so that a child with a secure attachment style grows into an adult with a secure attachment style.

You may be wondering what this has to do with chronic physical illness. Imagine—a person living with chronic physical illness, who has felt secure in his or her relationships for the majority of life, is suddenly hit with the unpredictability brick. At first you wonder, “will I die, will my friends abandon me, will I disappoint others?” After some time you experience a period of fairly good health and your foundation of security in relationships allows you to maintain trust in the strength of your relational bonds. Then one day this person finds out that someone with the same condition becomes very sick and is hospitalized. There is an earthquake. The secure attachment style starts to crack. This person starts to wonder, “what if this happens to me” and “anyone could go at any time, I could go at any time.” The previously secure emotional bonds begin to feel more tenuous and fluid. The sense of stability and consistency, originally provided by a parent during childhood becomes threatened. Maybe some react by isolating themselves, or others may fluctuate between clinging to their loved ones out of fear of losing them and becoming very angry with their loved ones for not always being able to be perfectly present. A person who once had a secure attachment style may appear as someone with an insecure attachment style. Trauma—trauma shakes up one’s sense of security in self and in others—the trauma of living with chronic illness and witnessing what happens to others with the same illness, is no exception.

Does one ever really lose their secure base or is it temporarily challenged in the face of trauma? Perhaps people with a secure attachment style who are diagnosed with a chronic illness cope better and maintain healthy relationships with more ease than people with fundamentally insecure attachments. Can the original attachment style really change or does the person living with a chronic illness at times struggle with so much that their underlying security is temporarily forgotten and with time once again remembered? I would think that the attachments formed early on with one’s parents are the most powerful bonds experienced in life and that a secure emotional relationship with the parent will remain and carry a person living with chronic illness through difficult times. On the other hand, I do believe in the possibility of change through new relationships, such as the change that occurs in psychotherapy when previously insecure styles can evolve into more secure ones. That is the positive spin, but if that can occur it could be possible to conceive of the opposite occurring as well—secure to insecure. Maybe in the end it does not really matter whether or not the attachment style really changes, but rather the importance lies in understanding the experience of what occurs to one’s world and one’s sense of security in relationships with self and others when living with a chronic illness.