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:


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.

Mirror Mirror on the Wall...

Mirror mirror on the wall, why can't I see my experience in you? Mirror mirror on the wall, why can you no longer show me who I am? Mirror mirror on the wall, you used to see me before I got my illness and now you just don't seem to understand. Mirror why do I feel so all alone?

According to Heinz Kohut and self psychological theory, a healthy sense of self evolves during childhood when three particular experiences take place. These experiences include, first having a role model to look up to and which one can idealize and desire to be like. The second is having a relationship with a parental figure who evokes a certain likeness between himself and the child. Lastly but certainly not least is the third, and it is what is called a "mirroring" experience. The mirroring experience is when the child presents some aspect of him or herself (e.g. thoughts, feelings, artwork, behaviors) and the parental figure acknowledges and validates the existence of what the child presents...much like a mirror. Although these exeperiences allow the child to start out with a very grandiose sense of him or herself, as normal disappointments in life occur a person learns to soothe him or herself, and learns that frustrations are a part of life, rather than destructive. This is how people build up resilience.

Mirroring for a child is not a very difficult thing to do. It can be easy to understand a child's desire to feel pride, happiness, and even guilt or shame at times, as these tend to be quite universal feelings. Many people grow into adults that have a pretty solid sense that if they communicate what they are experiencing to others, the others will empathize or at the very least understand. However, there are experiences that are not universally shared, such as traumas. Not everyone serves in the military encountering daily death/injury; not everyone is raped; not everyone is diagnosed with a chronic physical illness. What happens when these traumas occur? How does this impact the self?

When a person experiences something outside of daily normal life, particularly when it threatens life as it had been previously known to the person, experiential time can stop. For example, a person is diagnosed with a chronic physical illness that nobody else that he or she knows has. This illness requires massive life adjustments and learning to tolerate physical discomfort and pain. This person really just wants to be understood. S/he just wants to be able to look in the mirror in another person and to just feel a mutual understanding. However, in cases like this, the person may look into the mirror for a reflective understanding and may find that s/he has to start describing to the mirror what the experience of having the illness is like. Where is the mirror? If the mirror cannot reflect what I am going through then why bother talking? It feels so lonely.

Just as in childhood, the more people face daily frustrations and see that they are tolerable, the more resilient the child becomes. Disappointments are a piece of the nature of life and therefore are things that are also universally shared with others. One can fail a test and feel sad and the mirroring mother can say to the child with a real sense of reflective understanding, "oh I know you feel so sad that you did not do well." What happens when the frustration is one caused by constant physical pain, nausea, fevers, drastic weight change, inflamation, massive fatigue, fear of hospitalization, or fear of death? Sometimes the mirroring effect becomes something like a fun house mirror where you look into the glass and see a distorted image of yourself. A person with a chronic physical illness may try to start describing a feeling related to living with the particular illness and his or her mother may try to reflect something sympathetic back, but it misses the mark because this mother never experienced anything like the particular illness before. This can leave things going one of two ways for the person living with the illness. One, the person may shut down completely and continue to carry this experience all alone, feeling isolated, and person even harming his or her own sense of self (e.g. I am the only loser with such bad luck as to get this sick). Two, the person can strive to find people who share the experience of living with the chronic illness.

Imagine joining a support group where you get to meet and speak with other people who live with the same experience. This becomes like the child who brings his crayon drawing to his mother and says, "mama look what I made" and the mama says, "its so beautiful." As a person living with a chronic physical illness, you may say in the group, "my hair keeps falling out" and another person in the group says, "it is so terrifying." Mirror...mirror....

Now that you have found a new mirror, that does not mean you need to abandon any hope for support from your friends or family. Sometimes it just requires a little education and patience. Remember, they have never been through what you are going through so it is not easy for them either. It is hard to watch someone you love suffer and not know what to do. Let your loved ones know that they should not jump to any conclusions about how you feel and to try to read as much as they can about your illness and maybe attend parent/friend of people living with illness support groups to learn more about the illness. Also remind them, that as human beings, even though they may not have a chronic illness, they all experience moments when mortality is made present. They can think about when they felt really sick from a flu or virus, or if they have ever had a surgery or procedure. These things are not the same as your illness but it can open up little bits of empathy. Also all people have thought about fears of death before. There are ways to relate to what can feel like the unrelatable.

Children do not get to choose what kind of mirroring they get. Unfortunately some get the fun house mirrors and may grow up with very distorted images of their selves. As adults there is a choice. You can choose to find people who will understand you. You can look into the mirror and see yourself in someone else. You do not have to be alone.