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!

When Memories Take on New Meaning: In Honor of Lupus-Awareness Month

A twenty-something year old woman travels to the other side of the world on a study abroad trip. It is her first time to this city and she wants to see everything! She lives in student housing with five other young ladies who after dinner are excited to explore the local bars and dance clubs. The young woman wishes to join them but feels so tired. She wants to go to sleep. It is 10pm and her suite-mate asks her why she is not joining the group. The woman replies, "I am so tired." Her suite-mate stares in disbelief and reminds her that she did not travel thousands of miles to go to sleep. After all this young woman is not an old lady, even though in that moment she felt like one.

It was a beautiful August day. A seventeen year old girl felt pins and needles throughout her calf.  Parts of her leg stayed numb for hours. Her wrists hurt badly. She wondered if it was all the racquetball she had played on the beach. These random and strange symptoms went away after two days.

The pediatrician reported that the rashes on this fourteen year old girl's torso were an allergic reaction. To what? Unknown. Fifteen years later these rashes appeared on the girl's legs. The dermatologist said it was allergic reaction to a medication. They were so itchy...it was unbearable.

A twenty five year old woman is convinced she has mono. She can barely muster the energy to get out of bed in the morning. She feels as if she has the flu. Something does not seem right. She visits her doctor. Blood tests are normal and there is no swelling of any of her organs. She is told she might just be getting over an infection and her body is just taking time to adjust. It did not seem right to her but eventually her energy came back.

A thirteen year old girl is convinced she is having an asthma attack and is taken to the emergency room. She feels as if she cannot breathe. There is an intense pressure on her chest. The E.R. doctor asks her to breathe in tube to measure air flow and pressure. He tells the girl's mother that her air flow is not obstructed and her breathing is normal. The adolescent girl is convinced that something is wrong and the ER doctor orders an X-Ray. The doctor is surprised when the X-Ray shows inflammation around the inner lining of the girl's lungs. He believes it is related to allergic asthma.

These are just some of the memories of one person. These are the memories, which until a diagnosis of lupus was made were memories of random and unexplainable health problems. These are the memories which at times made this person feel flawed, strange, and as if none of these symptoms were worth making a big deal about. This is the cruel mystery of lupus. Years and years of strange symptoms that did not seem to be related to each other but which in hindsight form a picture of a person with lupus.

Lupus is typically very difficult to diagnose because of the range of symptoms with respects to both severity and symptom type. After a diagnosis is made, a person can look back on his/her life and recall moments--memories that all seem to make sense now. It is like reconstructing a complete narrative of one's life. A person may think, "so I am not just a person with bad luck and a propensity for random health problems." These memories take on a whole new meaning. One may wonder about, "If I only knew then..." or "why didn't these doctors put the pieces together" or "maybe I am not lazy or like an elderly person after all!!!" It is not fun to receive a diagnosis of a chronic illness; however, recalling memories that now make sense post diagnosis can be incredibly healing psychologically. It doesn't all make sense now but maybe it makes more sense than it did before!

May is Lupus Awareness Month. Take a moment to educate yourself about this bizarre and debilitating illness. Maybe make a donation to one of the many organizations that support research to help find a cure for this currently cureless mystery. 

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.