chronic illness

Dangerous Assumptions. Compassionate Curiosity

"Why do you need a seat? You do not look sick."
"That person is not dieting. What a liar. S/he is too overweight. S/he must be lazy."
"Another missed day at work. Slacker."
"Leaving another party early? Do you not like to socialize or are you just selfish?"
"Anxiety again... What an attention-seeker!"
"What is she waiting for? Isn't she going to have a child already? I guess she is more of a career woman."

All of these statements and questions are just a few of the many assumptions that people who live with chronic physical illnesses may have to face throughout their lifetime. When people think of prejudice, they usually associate it with assumptions about people based on ethnicity, race, or religion. However, people who live with chronic illness experience prejudice as well, and if someone is a minority who lives with a chronic illness then they might experience double prejudice. One may not think about the impact of his/her assumptions on others, but it is important for people to understand that these assumptions can be very hurtful--even dangerous.

A person who has missed many work days because of illness, oftentimes experiences a lot of shame and may be concerned about being perceived as incompetent or lazy. Imagine how frustrating it must be for someone who is a dedicated hard-worker to have to be home-ridden due to physical or medical limitations. Imagine what it would feel like for that person to hear that others question his/her loyalty to the job.

At times, people casually may ask a young woman, "when are you planning to have a baby?" This question may be asked with no mal intent; however, rarely does one think about how loaded of a question this may be. What if the young woman is incapable of having a child? What if pregnancy presents with a host of medical complications for the young woman?

Many people with hypothyroidism struggle with significant weight gain and some people with other illnesses may be taking medication that results in significant weight gain. They are not unaware of their body weight. They do not need others making them feel any worse about it than they already might feel.

I can go on and on about such assumptions. Assumptions are dangerous. Assumptions can be hurtful. Assumptions are inconsiderate. Assumptions are selfish....rather than assume, perhaps gently inquire. It is ok to have curiosity. One may non-judgmentally ask, "Are you ok? I noticed you have been missing a lot of work lately" or "you have been very anxious lately. Are you doing ok?"

Now, not all loved ones, coworkers, friends, acquaintances, employers, neighbors, etc... are going to be capable of or even interested in being non-assuming. This is when it is important for the person living with the illness to educate. I know it can be frustrating to have to constantly educate others about what you are going through but if you let others make these assumptions, you are likely to remain angry, frustrated, misunderstood, and even depressed or helpless. You do not have to be helpless. Perhaps say, "Yes I have been missing a lot of work and I wish I had your health to be able to come to work every day. My illness does not allow me to do this." Or perhaps, "If you had my thyroid, you'd be overweight too. I can eat salad all day and still not lose any weight." Or, "Put yourself in my shoes. I can stay here and party with you guys all night long and then pay for it in body pain and suffering for the next week, or I can take care of myself, go home and rest, and be able to see you again for a bit next weekend." You may still feel angry that you have to explain yourself when others do not have to, but at least you stood up for and took care of yourself.

Maybe next time a seemingly healthy looking person asks for a seat on the bus, you can (assuming you feel healthy) give up your seat and kindly ask if that person is Ok. We do not always have access to what is going on inside another person's body. An assumption may pop into your head, but rather than treat it as fact, treat is as just one of many possibilities and be curious instead. You may choose to assume that the person asking for your seat is being selfish and then you may watch that person collapse. Assumptions are dangerous but curiosity can go a long way.

Happy 4th of July!

The Complication of Doctor-Patient Communication


Do you ever think about what it means to visit the doctor? Most people do not attach much meaning to such visits but rather consider them as just any component of one’s yearly routine. Experienced quite differently, visiting the doctor when living with a chronic physical illness is accompanied by a host of complicated emotions. There are many layers to consider. For example, there is the literal communication style of the doctor one is treated by. Is s/he authoritarian, collaborative, or passive? Another layer is comprised of all the associations and emotions that journeying to a doctor’s office brings up. Similarly, such visits may elicit anxiety or fear about one’s condition. These are some of the thickest layers, although if one takes the time to reflect many more may emerge.

How have you interacted with authority figures throughout your lifetime? Do you feel comfortable with others telling you what you should do or do you react negatively to such direct suggestion? Perhaps you grew up in an environment where you were directed on how to make personal decisions and feel anxious in situations when you are not told specifically how to proceed. Maybe you feel like you have had enough of others telling you what to do and seek a relationship where you feel like you are an equal collaborative partner. Regardless of your personal history and style, it is important to identify what interpersonal communication style works for you when seeking out a doctor. If you prefer a doctor with a more collaborative approach and yet you visit a doctor with an authoritarian approach who insists on doing things his/her way, then you are probably going to leave the appointment feeling a bit more uneasy than if you sought out a doctor with a communication style that works for you. Of course there is probably going to be moments when your doctor recommends something that you do not want to hear but which is the best option for you, but this is different from a consistent communication style. Reflect on yourself and on your needs. If you see a doctor with whom you do not feel comfortable communicating with, you are probably going to be less likely to adhere to treatment recommendations, even if they are the most appropriate recommendations for you.

Sometimes less tangible than communication styles, are the associations and emotions that come up when visiting the doctor. These vary depending on the person, the time in the person’s life, among other factors. Feelings regarding self-image may emerge. The appointment may serve as a reminder of the changes that have occurred in one’s life, including visible changes in one’s body, mental state, and relationships. Associations to trust and betrayal may be present. What happened the last time you shared with someone the results of your doctor’s appointment? Can you trust this doctor when you had a bad experience with the last? Frustration is also quite common. Imagine having 2-3 medical appointments a week, which is not that uncommon with people who live with chronic conditions. It can feel like not only is the illness taking time away from your life but that the visits to the doctor are also eating away at your time. In its more intense form the frustration can also be anger.

Perhaps the most obvious layer and at times the most uncomfortable is the anxiety and fear that looms a few days, and at times weeks, before a specific appointment. One's initial diagnosis can very often be a traumatic experience which can shatters one's sense of security in the reality s/he believed to be. The what if factor may arise. What if the results of the tests are not good? What if there is an additional diagnosis? What if I am told I need more treatment? What if the treatment recommendations come with side-effects? The list goes on. This fear and anxiety can be maddening. 

This brief essay has not even scratched the surface of what is involved for a person with chronic illness when communicating with doctors. Much of these fears and associations may feel uncontrollable and at times usually very helpful coping mechanisms may feel powerless. Sometimes it is just a matter of finding a way to tolerate whatever comes up and knowing that it will pass. However, one thing that is more in one's control is finding a doctor one feels comfortable with, can trust, be honest with, and who takes you seriously. Additionally in one's control is the power to educate. Educate your loved ones, family, friends, coworkers, and ignorant strangers on what it is like to interact with medical professionals when living with a chronic illness. It will be worth it, even if you can stop just one person from saying, "your going to the doctor, what's the big deal?" That is one more person who now understands. 

Just Sitting ...

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

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

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

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

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

Stealing the Healthy Moments ...

It is easy to forget what health felt like when one lives with a chronic physical illness. All too often what remains on one's mind is pain, suffering, difficulty, adjustment, frustration, anger, and sadness. There can be a lot of nostalgia as one recalls what s/he used to be able to do, and a longing for a return to those experiences. It is easy to live in the past--the what was, and to detest the present, while fearing the future. However, it is important to pay attention to those moments (sometimes big other times small) that even for just a minute are moments of health.

Stealing those healthy moments...what does that mean? It can mean many and different things between people and within a single person. Perhaps a person living with a chronic physical illness has also lived with a dream. What if that person lived out that dream despite his/her illness. Despite one's obstacles s/he published a work of art, or went on a long desired trip, or took a class. These events do not take away the reality of illness but they still occur despite the illness. They are moments of non-illness, of health, and of living.

Some people may not be able to partake in such events because of their illness. One may wonder how they can steal such healthy moments. For example, ten minutes of peace within a day filled with pain might be the healthy moment for a person. It can be so easy to say, "but the rest of the day is suffering so what is ten minutes", but this thought creates a situation where one cannot even enjoy the ten minutes of peace. Those ten minutes are even more precious and exuberant than they would be for a person who does not live with illness. These are ten minutes to bask in health for that period of time. Maybe for another person it is only one minute. The point is not how big the task accomplished is, or how long it lasts, but rather how much one can let him/herself be in that moment and feel health in that experience.

It is not easy to steal the healthy moments. It takes conscious effort to change one's mindset and to refocus one's awareness and attention; however, it is worth it. Take a little bit of time each day to work on this. Some days might be better than others. Some days it might be impossible to find any of these moments. Other days might be joyous. As always take one day at a time and do not be afraid to ask for help with this. Meditation and psychotherapy can help refocus your awareness and attention. I hope you steal some healthy moments.

It's all in the Core

Illness...such a broad term. It can mean so many things and can take on many different forms. It can constitute multiple experiences and sometimes it can be very hard to find the words to even explain what it is that one lives with. Each type of illness has its own pathway but many illnesses meet in a point of intersection--the person's core.

The core? What is the core? Physiologically speaking, the core is in the center of the person's body, around the abdomen and stomach. There are many exercise programs that focus on strengthening the core in order to provide stability to the rest of the body. The core can also be a metaphor for one's self-esteem, and in ancient eastern philosophy is the site of the solar plexus chakra, the place of power and inner strength. 

No matter what illness one lives with, at some point, the illness will interfere with one's core to some degree. Imagine living with chronic pain. One curls into a ball or fetal position frequently in effort to curtail the pain. The stomach and abdomen hidden from the world, closed off from possibilities, and physically weakened. Consider a person who takes so much medication that his/her stomach is in constant pain from the inability to digest such heavy substances. This person holds his/her belly and curses the knife-jabbing sensations s/he experiences. Other people may be so weak because of their illness or the treatment of their illness that exercise has become a vague memory.  Their stomach muscles may feel tired, fragile, or even non-existent.

One may wonder, "What's the big deal? It is just another body part." It can be easy to forget how intertwined bodily experiences are with sense of self. We are not separate body and mind but rather a whole person. It does not feel good to be hidden from the world; to be curled into a fetal position and in pain. This physically closed off posture may mirror an internal feeling of being distant from the external world; a metaphoric representation of feeling alone and perhaps misunderstood. It is a physical manifestation of self-protectiveness rather than fiery risk taking stance of confidence. One may want to open up (physically and psychologically) but fears the physical pain that s/he may experience in the stomach/abdomen, and/or the pain of being not understood or dismissed by others. It can at times feel safer to stay in bed with hand covering and hiding the stomach.

Self-protection is not necessarily a "bad" thing. With a comfortable balance there can be room for self-protection, and potential for openess, confidence, power, growth--a strong core. Nothing is black and white. One can learn to develop a keen awareness of self; an ability to know when it is safe to come out of the fetal position and take a small risk versus needing to stay tucken into oneself. This moment when it will feel possible to open up will be different for each individual. It is a process of learning to really know yourself well--it's all in the core. Listen to your gut. Take yourself seriously. Take your time to hear yourself and start off small. Good luck and be well.

The Tattoos I Didn't Choose--Scars...

So many different colors, various shapes, and multiple textures. Some are so large they cannot be hidden or ignored. Others so tiny they are forgotten until they are accidentally touched and their bumpy surface felt once more. They are the markers of illness; the products of surgery, biopsy, permanent rash, eczema, scleroderma, scars--they are the tattoos that were not chosen.

People commonly choose to tattoo their bodies with images that contain some meaning to them and images that they wish to look at on a daily basis. Something permanent on the body forces one to face whatever the tattoo symbolizes without the option of escape; this is a choice. People living with chronic illness are often filled with unwanted and unchosen tattoos. They are constant reminders of their journey with the illness. Imagine looking at your clavicle every day and seeing the scar from your last surgery. Perhaps it can be covered up with makeup; however, the knowledge that it is still there cannot be as easily hidden.

When people experience traumatic situations, they typically want to avoid any reminders of the trauma. People in car accidents may be afraid to drive or war veterans may avoid areas with very loud sounds. These reminders of the trauma can cause anxiety and in some cases a physical feeling of the trauma being relived. It is not too hard to imagine what it is like when a reminder of a trauma cannot be avoided, such as in some cases of these unwanted tattoos. A person may look in the mirror and see the scar on his/her back. To another it may just look like some sort of surgery scar, but to the person with the scar it may hold volumes of experiences and carry a lot of meaning. This one scar could be the concrete representation of a decade long journey battling kidney disease. It could be a reminder of intense pain, daily difficulty, the source of conflict in relationships, the reason for lifestyle changes, and the outcome of a suffering surgery. All of this cannot be avoided...it is right there carried in that unwanted tattoo.

One may wonder how people with these unwanted tattoos can possible deal with their traumatic experience when such powerful reminders of the trauma cannot be avoided. It is possible! In fact, a large part of working through and healing the trauma is when the feelings associated with the trauma are no longer avoided. The unwanted tattoo can actually serve as a reservoir of feelings that do not yet have words and maybe are not even in one's conscious awareness yet. Taking time to think about and share with someone else all of what the unwanted tattoo carries can free one of the trauma. The power of the experience starts to shrink as the person begins to transform into the master of his/her own experience. The scar becomes a container of stories from the past rather than an image of torture that creates a bodily response of fear and anxiety. Of course when one is ready to embark on this journey depends on when each individual is ready to do so, and it is crucial to explore this with a trained psychotherapist as it can be a difficult and lengthy process.

Today the rash is a symbol of suffering and helplessness, someday it could be a reminder of strength, survival, and one piece of your life. The unwanted tattoo was not a choice; beginning the process of transforming its meaning is. What will you choose?

Alone...Actually You're Not!

Millions of people suffer from undiagnosed chronic medical conditions. Living with any chronic physical illness is likely to be challenging; however, there is something especially frightening when experiencing numerous painful symptoms on a daily basis without any understanding as to why they occur. Oftentimes, people who live with undiagnosed medical conditions have to undergo countless invasive tests and procedures only to be told that there are still no answers, have to take multiple prescription drugs with minimal benefit and oftentimes unpleasant side effects, and have to withstand being dismissed by both the medical and lay population simply because their illness does not have a name. People having this experience can feel very alone.  It can be extremely lonely to have an experience on a daily basis that nobody else in one's life seems to undertstand or know anything about. However, there are millions of people who feel this way. They may not always know each other, which makes it feel like they are alone, but there are other people out there with just the same experience.

Autoimmune diseases are typically the culprit underneath these unamed illnesses as they can present in a number of different ways and are extremely tricky to diagnose. It can take years, even decades before a proper diagnosis is made and subsequent treatment is offered. For example, WABC-TV writer and producer, Nika C. Beamon suffered from an undiagnosed chronic medical condition throughout her 20's and 30's before finally being diagnosed with a rare autoimmune disease called 1gG4 related systematic disease. She used her experience to spread some awareness about how great of a problem undiagnosed medical illness is in the United States and how much it affects peoples' lives both financially and emotionally. In her memoir "Misdiagnosed: The Search for Dr. House" she details her journey over the last two decades of her life as she tried to get an accurate diagnosis and appropriate help, and provides tips for how to cope while going through this journey. Below is an excerpt from her book.


"Everyone says I should be glad, happy, relieved—pick your own adjective—to finally know what’s wrong with me.  F*** that. I spent the better part of my twenties and all of my thirties, which should’ve been my carefree years, worrying and trying to find a real life “Dr. House” to help me. Instead of hanging out at clubs, I was laying on my back in hospital rooms and on exam tables hoping someone who tell me I wasn’t some sort of “freak of nature”.  Rather than meeting men or dating around, I drove countless smiles to meet a slew of strange doctors. But, what else was I going to do? How far would you go to find someone to help end your suffering?  For me, I would’ve done anything to locate anyone with the answer that would cure me.

I had to endure a colonoscopy, 5 endoscopies, 2 surgical biopsies, a spinal tap, a transesophaegeal echocardiogram, countless blood and urine tests, and enough radiation that I probably glow in the dark. But, I had no choice, or at least that’s what I was told at the time, if I wanted to figure out what was going on inside me that was making me so ill.

 I got the MRI’s, CAT scans, and any other kind of exam, procedure or test they ordered because doctors know what’s best, right? I visited doctors with names no 40 year old should know: hematologist endocrinologist, dermatologist, cardiologist, rheumatologist, immunologist, neurologist, radiologist and an infectious disease specialist.  And, as the list of specialists grew, my list of medications increased, as well. Unfortunately, most of the drugs I was on had no street value so I couldn’t even sell them to make back the fortune in hard earned cash I shelled out for them.  To cover the cost, I skipped vacations, new clothes or furniture, dinners out and even holiday presents.  Just trying to keep track of the refills or which doctor prescribed what drugs required an excel spreadsheet. Yet, I did it for the better part of two decades as I battled a host of diseases, none of which I’m sure I ever really had: mononucleosis, chronic fatigue syndrome, GERD, erosive esophagitis, Barrett's esophagus, PCOS, acanthosis nigricans, insulin resistance syndrome, NAFLD, transient ischemic attacks, Sarcoidosis, lymphoma, etc…

My years of being half dead didn’t only affect me -- nearly everyone else in my world suffered with each misdiagnosis; the least vocal were my parents.  They rushed to hospitals in three states taking solace only in the change of scenery. Innumerable times, they changed my clothes, drove me around, made my meals and listened to me bitch about one doctor, procedure or medical bill. On the days I was too weak to complain, they finally had the time to wonder if their oldest child and only daughter would outlive them, have a family of her own, or be able to just live on her own indefinitely. 

The men in my life were always forced to balance in a precarious position; caring for and about me but wanting the normalcy that every couple should have.  I, like I’m sure they did from time-to-time, questioned why they, healthy, attractive, single men in their twenties or thirties would want to be shackled to a girlfriend puking or passing out all the time, not due to alcohol. I’m certain staying nearly every Friday and Saturday night so we could be in bed by 9, unless it’s to have sex repeatedly, was not their idea of a good time. Yet, I was fortunate enough to be loved not just by one man but by a few as I tried to figure out if I’d ever have a relationship in which marriage and kids could be a consideration. Perhaps my inability to pressure any of them for happily ever after was the one unique sense of relief I provided to them.

When it comes to my friends, I am aware that the ones left standing after years of get well cards, calls, and visits, are the ones who truly didn’t tire of asking the same questions so many time; they’d have been better off recording them and playing them back rather than exerting the energy to utter them. The most common ones:   What did the doctor say? How did your test go? How do you feel? Is there anything I can do? The whole time, I have no doubt they were quietly hoping I’d give a terse response that amounted to me not needing their help or time.

By far the people I’ve spent the most time with, my co-workers, had to endure the least uneasiness because of my anomaly. Our jobs in television news, exposes us to varying degrees of human suffering daily so mine barely even made anyone break stride, miss their story slot or even lighten the work load.  In fact, my bouts with illness didn’t even make an internal email chain but when several of our reporters battled Cancer that was considered news. Hell, they even taped their treatments and recovery to boost ratings, although their stories were always billed as an opportunity to simply educate the public.

Now this is not to say that everyone I work with is cold or callous. They have all expressed their concern over the years. Sure, if I was visibly weak, they’d get me a glass of water or aid in getting me to the elevator. It’s just that work was the only place where I truly felt “normal” consistently. It was the only place where the way I was didn’t overwhelm anyone’s ability to see my intellect, and to push me to forge forward through every assignment, show or day. 

Just about the only people who have gotten off scot free were my extended relatives; the people who are only closer to you than a stranger because they share a blood line. I’d gather some of them would beg to differ with me because they sent a random message on Facebook or through email to ask about my well-being.  The truth is though the questions were usually to fill family gossip with a new nugget instead of truly to ascertain what, if anything, they could do to help me. I’ve been fortunate enough not to have ever truly needed any of their help.

I now know I have an autoimmune disease, which means a lifetime of chronic illness; this includes more doctors visits, pills and scans.  But, thanks to the news I’ve received, I won’t need anyone’s assistance or at least not the way I did before. I guess, that would be one plus. Another is that while I am a “freak of nature” because I have a condition few others share (IgG4 related systemic disease); I am not alone, struggling to find an answer anymore."
Nika Beamon definitely does not hold back. She speaks from her experience-- the experience of millions of others who just wish someone could tell them what is causing their physical suffering. One of the most important ways to cope with living with chronic physical illness is to find a supportive community-- to find ways of not being alone. Sometimes people join support groups, organizations, fundraising teams, or read lots of books by people going through similar situations. Maybe "Misdiagnosed: The Search for Dr. House" or other books like it can be helpful to you too. It is so easy and so completely understandable to feel alone, but actually YOU'RE NOT!

 

 

 

 

 

Getting Rid of the Boogeyman ...

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

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

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

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

In this moment GOODBYE BOOGEYMAN!


Double Stigma Double Shame

Too often people who live with chronic physical illnesses are ashamed to share their diagnoses with others. This shame may interfere with peoples' comfort with asking for help, taking medication, requesting accommodations, and seeking out interpersonal supports. Where does this shame come from? Is there any logical reason for people with illnesses to feel ashamed? After all most people do not want to live with disease or disorder, and do not want to suffer because of it. Some of the shame may be idiosyncratic and just part of a person's personality or history; however, oftentimes shame follows from stigma.

Think about how many times people lower their voice to a whisper when talking about illness. "Oh did you hear Sally has breast cancer." Illnesses are spoken of as if they are dangerous to everyone around the person with the diagnosis, even when the illness is not contagious. Most of the time people become nervous when encountering topics they do not understand, which can follow with a feeling of uncontrollability and fear. It may not necessarily be that people are afraid of the person living with the diagnosis, but rather the concept that humanity means mortality. Despite the motive of this behavior, imagine how it can make the person living with the illness feel. Open expression and sharing of what it is like to have a particular illness or even revealing that one has an illness may not necessarily feel safe. This is especially true with certain diagnoses that can come with unfair assumptions about a person's character, such as HIV or AIDS.

Having to deal with experiences like stigma, shame, and many other feelings that can come with living with a chronic physical illness may make it necessary to seek out professional support. This is where double stigma can come into the picture. Societal stigma associated with seeking out the help of a mental health professional can be even greater than the stigma surrounding medical illness. There are many unhealthy ideas about psychotherapy such as needing therapy means someone is "crazy." The word "crazy" itself is meaningless, and needing to speak with a professional when adjusting to adaptively coping to living with a medical diagnosis is the epitome of normality. Stigma around psychotherapy is a very common reason that people avoid getting help that they may greatly benefit from. This stigma also contributes to feelings of shame. People may have irrational thoughts such as needing help means they are weak, crazy, or abnormal, when in reality being able to stand up to stigma regardless of intense feelings of shame is a huge testament to one's strength.

Not everybody who is reading this may have had the experiences being discussed above. However, if this resonates with you then search inside for a new piece of courage to face stigma and shame head on. Maybe some will not be able to understand why you see a psychologist, and that's something that you do not need to share with anyone if you do not want to anyway. In fact, psychotherapy may help you learn how to better deal with people's assumptions about your medical diagnosis and stigma in general. People may still want to whisper when talking about how you have advanced type II diabetes but it may not bother you as much anymore. Remember, the stigma comes from society's and others' insecurities and not from anything being inherently wrong with or bad about you. While double stigma can typically bring double shame, you can learn to make it bring double strength, courage, understanding, and even intimacy with others. Good luck on your journey.



Frustrating Incongruent Optimism

"It is going to be ok and you will be fine! You'll feel better real soon. If you'd just get off the couch and get outside you'd feel so much better. My aunt had that diagnosis too and she was not sick for too long."

Do any of these comments sound familiar? Most likely they come from well intentioned people who care about you and believe that these are the types of statements that will contribute to "feeling better." Unfortunately at times they are the last thing that a person suffering from the symptoms of a chronic physical illness wants to hear. Due to the impermanent nature of sensations and states, it is likely that at some point one may feel better than what s/he feels in the moment.  However, in that moment these statements are frustratingly incongruent with the suffering person's experience.

It can be difficult for people to tolerate seeing loved ones in pain or discomfort due to illness. Despite a genuine desire to help, these optimistic comments are often the product of the commenter's anxiety rather than valid means of assistance. People do need to be reminded at times that the state s/he is in will eventually pass, and maintenance of hope is critical to healing with respects to physiology and psychology; however, an equally and at times more important need is the experience of validation. Imagine how lonely it can feel for a person with an illness who is enduring continuous pain, dizziness, fatigue, confusion, rashes, swelling, hair loss, bone loss, or any other extremely uncomfortable symptom, when they hear a loved one say, "its gonna be ok." Yes, hopefully and in many cases it will likely be ok but in that specific moment it is not ok. In that specific moment it is horrible and unbearable and acknowledging that is ok!

Sometimes the best form of help a loved one can offer is to ask the person who lives with an illness what s/he is feeling in the moment, and to let that person know that it is ok to be angry, sad, or frustrated about what s/he is going through. After all, the reality is that it does feel awful to be dizzy, to not be able to focus your eyes on reading, to experience muscle pain, to vomit profusely, to watch your hair fall out, to watch your joints deform, and to live with many other symptoms that come with living with a chronic physical illness. It can feel really good for a person living with such an illness to know s/he is not alone--someone acknowledges the validity of the experience.

Many loved ones may fear that if positive statements are not provided the person with the illness will become depressed and lose hope in healing.  There is a big difference between having a "bad health day" and clinical depression. If someone feels hopeless more days than not, it would be wise to help them get help and contact a mental health practitioner.  Many people who live with chronic physical illness do become depressed at times and it is advised that some sort of therapeutic support is sought after. However, when a person with an illness is just having a bad day, it can be extremely helpful to just be there with him/her. There is a way to keep hope alive and just be in the moment with the loved one. For example, "I am sorry you have to feel this way. Maybe tomorrow will be a better day, but I know it really stinks today. I am here to listen. What do you feel like today?" It can be very helpful to show interest in what the person with the illness is experiencing in the present moment. Sharing unpleasant emotions can really lighten the load for the person who is carrying them, while making some disconnected optimistic comment may leave the person feeling misunderstood and alone, and likely to not want to share his/her feeling's with others.

Frustrating incongruent optimistic comments may at times suggest that a person is in denial of his/her loved one's suffering. Moving past denial is critical for the person's living with the illness ability to cope, and this can be a difficult feat if the people in that person's life cannot move past the denial themselves. None of this is easy. Nothing about living with a chronic physical illness is easy. Nothing about having a loved one suffer from such an illness is easy. Everyday is a learning experience and the less one judges him/her self the smoother the process will be. Stay true to your experience and ask for help when you need it. Good luck on your journey.

Finding the Love within the Loneliness

That time of the year has returned--Holiday Time! This is a period of great ambivalence for most people. There is excitement about gatherings with loved ones and there is also anxiety about the many activities one is expected to engage in. Many wonder how they will manage to find balance between enjoyment, responsibility, and rest. The Holidays are also about love--being with loved ones, sharing your love for others, and giving with love. It can be easy to take the experience of love for granted; however, the Holidays can be extremely lonely for some people who live with chronic physical illness and finding the love within the loneliness may be a struggle.

Imagine multiple holiday gatherings, night after night, on work nights and with drinking involved. For someone in good physical condition this may sound fun. In theory, this may also sound great to someone who lives with a chronic physical illness; however, practically this may feel exhausting or emotionally anxiety provoking. For example, a person taking certain medications may not be able to drink alcohol. Another person undergoing certain treatments may not have energy to engage socially for so many hours. Another person may require a number of hours of sleep otherwise s/he will suffer the next day. Some people may not look physically well or may have a skin condition or deformity and may feel embarrassed or ashamed to see many people. It may be easy for someone who has never had such an experience to say, "what's the big deal" or "get over it;" however, for someone who lives with a chronic condition these situations can bring up numerous emotions.

At times people with chronic conditions attend some of the holiday events and may worry about what they will say to others when they need to leave early or decline a drink. These folks may dread responses from others such as, "Come on. Stay a little longer. What's the big deal?" Or "You're being a bit too anxious aren't you? What will one drink do?" Or "What do you mean you can't eat that? What's wrong with you?" During these times, the person with the illness may struggle with how to answer such questions. Does s/he shrug it off and avoid answering it? Does the person disclose what s/he is dealing with and how much should the person disclose? So many decisions are to be made. It can be difficult to strike the balance between wanting to feel a part of the group but also to feel taken care of, accepted and loved, which includes taking care of one's illness as well. Even if someone with an illness does decide to attend these holiday events it can feel very lonely if that person does not feel safe or free to openly discuss what s/he needs in the moment. It can be like part of the person is there but another part is isolated and alone.

Sometimes all of these decisions and potential outcomes are too much for a person and some may choose to just avoid Holiday events.  Other times one may reminisce about what the Holidays were like pre-diagnosis and this may make one feel sad, believing that since things will never be the same there is no point in trying. This avoidance may decrease anxiety but it can feel very lonely. This avoidance can also reinforce a feeling of shame or embarrassment, which can be harmful in itself. There is a big difference between taking care of oneself and needing to rest, and avoidance due to an underlying thought that something is wrong with you and that nobody will understand. Avoidant behavior assumes that you cannot find the love within the loneliness so rather you give up. Avoidance is one of the least helpful coping mechanisms a person can use to deal with chronic illness.

As scary as the Holidays can be, what if there was a way to turn it on its head and create a situation where much love is found within an experienced lonely state? Maybe it will be too much to attend all gatherings, but maybe there are a few that one especially wishes to be part of. Who are the people you would like to see most? Choose wisely. Are these the people who will listen kindly when you explain how your rheumatoid arthritis has caused deformity in your hands? Are these the people who can respect your statement of not wanting to talk more about your chemotherapy? Are these the people who will appreciate how hard it was for you to join them and feel gratitude that you were able to be with them?  If the answer is no then you should probably save your energy and find something else to attend, and if there are no events that meet your criteria, create your own. There is a way to respect your needs and your unique situation and still be part of something bigger.

Living with a chronic physical illness is not easy and it can become less easy during the Holiday times. Loneliness is an emotion that thrives during the Holidays for most people but it can be especially detrimental to folks with chronic illness. It takes effort to find the love within the loneliness during these times but it is effort worth exerted. Remember, you never have to do it alone. If you do not already have the "right" people in your life, find a support group with people who are going through the same thing that you are. If you cannot find one in your area you can find many online communities. There are many people in the world...

Space for Everything...

"... live without walls of the mind. Without walls of the mind and thus without fears, they see through delusions and finally nirvana" (Pine, 2004).

Depression and anxiety are extremely common in people who live with chronic physical illnesses, particularly when the person experiences a persistent feeling of uncontrollability. People question, "what is the point of living if living with suffering?" Other folks may wonder if they are actually even living when homebound or limited in their activities. Somehow the value of one's life may start to feel less. It is so easy for the mind to misperceive and imprison when accompanied by suffering and unwanted sensations. Is what your mind tells you what you would say to another? Usually not.

The mind fools people into thinking that life must be joyful and pain free.  When something is uncomfortable people immediately attempt to control surroundings to ease the discomfort. This can be pleasurable but is it actually life? It is only a piece of life. Life in itself requires feeling...all feeling. To be alive means that one is fragile, one feels pain as well as joy, and that one's sorrows makes it possible to truly appreciate one's joys. But all of it is just a bunch of sensations. We feel and then we attach perceptions to the sensations...we experience the sensations with a group of thoughts. For example, there is a new feeling in my chest (sensation) therefore my cardiac disease must have returned (perception). Maybe it has returned or maybe it is just a new feeling that is benign. Until a doctor confirms what the new feeling in the chest is, all it really is is a new sensation. A feeling that you can feel because you are alive.

The value of your life remains the same, whether you are healthy or ill. One may think, "but now I cannot work and contribute to my family so I must be worthless." Again that is the mind telling one that working is his/her only source of worth. If one asks loved ones what they think about this, usually they will say that is not true. Value of life remains equal because in reality all life is emptiness. It is the mind that then attaches thoughts and perceptions to the emptiness. Yes what one with a medical illness may experience is tremendous pain and extremely uncomfortable sensations, but those are just the sensations that one wishes s/he was rid of...they ARE NOT ONE'S VALUE/WORTH.

Being alive require space for everything. There is space for joys like having children, falling in love, being at peace, and there must be space for suffering, such as physical suffering. Once this reality is accepted, the walls of the mind can come down and all sensations can simply be experienced as new indicators of breathing...of living. Frustrations with uncontrollability become less relevant and one can let go of fear.

This is not an easy path as the mind is a very powerful thing but there are ways to practice. Meditation is a good place to begin and if medically allowed yoga can be helpful, as are various forms of psychotherapy. Find a way to make space. A way that works for you.

Pine, Red (2004). The heart sutra: The womb of the buddhas. Counterpoint: Berkeley, CA.



Balance and Fear

Oftentimes people who do not live with a chronic physical illness attempt to help those who do by adapting a logical approach. They may say things like, "ok so at least now you know what it is" and "ok so now you follow the doctor's orders and do what you have to do to treat it." If only the experience of living with chronic illness was so detached from any emotional component. Others may acknowledge that being diagnosed with a chronic illness is upsetting; however, they probably do not grasp the experience of trauma that accompanies such diagnoses. The extent of uncontrollability and threat to one's being that follows is difficult to shake. Although some folks may dive into life in response to a realization that life is limited, many people become fearful and removed from daily existence.

All people are aware of human mortality, but most manage to find a way to banish that knowledge from the immediate present. This is quite a difficult task for people diagnosed with chronic physical illness. The illness itself and its symptoms serve as an ever present reminder of human fragility and limitation. A moment to reflect.... How terrifying is this?!?! This terror can lead some folks to be extremely fearful. Fearful of exerting the same amount of energy as pre-diagnosis, fearful of doing anything that could exacerbate symptoms, and extremely protective of one's self. But what happens when the terror and the fear become so powerful that one stops engaging in life? Ironically, the terror could create a self-fulfilling prophecy where the fear of death actually creates a metaphoric death in one's life. Where is the life if one is too afraid to live it?

How does one work through such a trauma? Somehow the person needs to find a balance that works for him/her. That balance will look different for different people. That balance needs to be tailored for a specific individual's illness and situation. The trauma of being diagnosed with a chronic illness should not be ignored. It should be addressed and acknowledged. It must be discussed. The fear is very real and very reasonable; however, a balance must be struck between what is actually protective/helpful and what actually creates a self-fulfilling prophecy of non-living.

It can be so hard for someone living with an illness to hear loved one's saying, "you're just using the illness as an excuse" or "you know you can push more than you are." The experience of the person is so much more complicated. Maybe the person can push more than s/he is but it is important to understand what is preventing the person from doing so. Sometimes things need to begin with "baby steps" and confidence needs to build slowly. The reality is that death will always loom in the back of all humans' minds; however, that reality is much more real in the minds of those who live with chronic illness. That reality needs to be respected and appreciated so that a transition can be made from paralyzing fear to fear that motivates one to mold his/her life in a manner that feels good, safe, and productive.

If a family member is feeling frustrated with a loved one who lives with chronic physical illness, it would be good to seek support or consultation from a professional or from others who have dealt with such a situation. If a person who lives with chronic physical illness feels traumatized following his/her diagnosis and/or misunderstood by loved ones, it would be advised to seek professional help. You do not have to live in constant fear. There can be a balance!

Isolation NOT Necessary

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

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

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

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

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

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

Why is Everything so Annoying?

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

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

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

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

Trauma and ReTrauma: A Painful Cycle

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

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

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

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

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

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

Words...

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

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

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

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

Guilt

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

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

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

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

Broken Dreams or Shifting Tides?

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

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

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

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