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Wednesday, October 12, 2016

Breaking Out of the Glass Box

From time to time I find that poetry is the richest way to describe certain experiences that accompany living with a chronic illness. One of these experiences is that of the fatigue that comes with systemic lupus. It is an exhaustion that cannot always be seen by the outside observer, and not adequately captured by the use of words such as tired, fatigued, or sleepy alone.

The following is a poem about this experience:

Inside this box I sit, the world surrounding me. I see people, the street, the sky above me. ... This damn glass box follows me.

There is a distance between us. It is one you cannot see. I know it is there because it keeps me from fully engaging.

I listen to you. I hear the words you share. I am there. I am there with my glass box, the one that is invisible to you. Inside my body coils as my mind wanders to a place of sleep and peace. I hear you but I want to close my eyes. I walk down the street, but I want to lay down to sleep.

This glass box keeps me from moving freely, sucking my energy, despite how many hours of sleep. Eight hours...? That is a joke. The box requires more. It holds you hostage as you watch others go about their day with physical ease.

I am trapped but unseen. From the outside I look fine, somewhat sluggish, and maybe a little lazy. This glass box hides its evil from the world, but I know it. I know the need to drink cups and cups of caffeine to get through the day, the need to nap and lay down by noon everyday.

How do I break this invisible box? That is the problem. Nobody really knows. I am bound by the rules of this box... to rest and sleep as much as it requires, so much of it not in my control.

I yearn for a moment of life outside this box. What's it like out there? Let me out please... How can I shatter the glass boundaries of this disease? What has happened to my energy? I do not know, but I need to sleep now please...


Tuesday, July 12, 2016

Through My Lens

I often find myself wondering if people who do not live with a chronic illness are aware of how often those living with a chronic condition tend to blame themselves and feel shame for things that are really out of their control. It is my inclination to believe that most people do not think about the intensity and frequency of self-blame, guilt, and shame that people living with chronic illnesses may inflict on themselves. These experiences of blame, guilt, and shame can be quite emotionally painful and can oftentimes result in the person doing things that are not in his or her best interest in order to not feel painful feelings. Although others may see no objective reason for blame, the person living with a chronic illness may be seeing their own behaviors and needs through a very different phenomenological lens.

Here are some common thoughts people living with chronic conditions may have:
- It is my fault we can't afford a certain lifestyle because of all my medical expenses.
- It is my fault my loved ones are stressed out.
- I am a terrible friend for not being able to make my best friend's birthday party.
- I am a terrible friend for having to cancel plans last minute.
- I am failing my partner in so many ways.
- I am so stupid for not being able to remember those words or forgetting what I wanted to say mid sentence.
- I feel so guilty that I cannot gratify my partner sexually.
- I am so embarrassed that I can not stay awake past 9pm. What must people think?
- I am so ashamed that I have to wear this mask, brace, wig.... What must people think?
- I am so ashamed that I can't control my bowels. What must people think?
- It is my fault my child is acting out. I cannot keep up with her/him.
- I should be able to push through more. I am not trying hard enough.
- Everyone must be so sick of hearing about my limitations and special needs.

When living with a chronic illness, one of the most common experiences of self-blame, guilt, and shame is that of feeling like a burden on family and friends. Being a supportive and loving family member or friend of a person living with a chronic condition includes making sacrifices at times, having to change plans, and listening to difficult feelings, among other things. Regardless of how often loved ones state that they want to be supportive in any way needed, the person living with the illness is still likely to think a lot about how their condition is impacting all the people in their life. This self-blame, guilt, or shame is likely to be especially heightened when a family member or friend is unsupportive in some way and does indeed hold resentment for having to make sacrifices, which is also not uncommon.

Regardless of whether or not one's family or friends are supportive, it is easy to lose sight of the reality that a person living with an illness does not want to be sick, does not want to have to make numerous adjustments to his or her own life, let alone want others to have to make changes for them. Yes people may have to make inconvenient sacrifices, but that is what relationships are all about and there are probably times that the person living with the illness made sacrifices for their loved ones.  Family and friends may have to go the extra mile, may feel stressed out, or may experience difficult feelings, but that does not have to be only an occasion for self-blame, guilt, or shame. Perhaps this can also serve as an opportunity for intimacy. It can be very easy to let these feelings keep you from letting others into your world. You don't have to be alone in your experience. People take pleasure in knowing that they can give and be present for those that they love. It can create a sense of closeness and connection. It can make loved ones feel like they have something to offer the person living with the illness, when they otherwise may feel completely helpless in the situation.

This is easier said than done. And perhaps this is out of the question if one's family members or friends are unsupportive and actually contribute to making someone feel like a burden. In this case it is probably a good idea to find another primary support group. Nevertheless, if one knows that his or her friends and family genuinely want to be supportive despite any accompanying hardships, then maybe this person can try and stay present with the love that his/her family and friends is wanting to give. Try and take it in. It may feel like they are giving you such a generous present, but in letting them be there for you, you actually may be giving them a gift as well. Perhaps, in that moment, the self-blame, guilt, and shame can be replaced with gratitude. And these feelings will likely ebb and flow, and the self-blame, guilt, and shame may re-emerge, but at least maybe there can be some moments of respite, connection, and gratitude.

If you find yourself or a loved one who has a chronic illness struggling with intense feelings of self-blame, guilt or shame, or if you or your loved one is shutting others out and not letting needs be known, it is probably the time to seek out help from a formal support group or a mental health professional. These experiences are very common and you do not have to be alone with them.

Monday, April 11, 2016

Normal, the norm...Whats that? What's My Normal?

When living with chronic pain or chronic illness long enough, at times some people can start to believe that their discomfort is normal, until a moment comes and they are reminded that in fact it is not. Many people who live with chronic pain and illness may quickly understand what I am referring to... those moments when you look around and realize that nobody else in the room is experiencing the pain that you are. This may feel obvious to some; however, pain and discomfort may have become the new normal for many people living with pain. It is always or usually there, and some people may have even forgotten what it is like to live without it.

I am reminded of a young woman who for many years fancied herself an active athlete with no limits to her physical capabilities. She ran marathons and engaged in martial arts. She also enjoyed yoga. This woman also lived with rheumatoid arthritis for the last 7 years. Her joints hurt daily which when she was first diagnosed caused her significant distress and even thrusted her into a depression. Seven years later she managed to learn how to adaptively cope with her pain and led a fulfilling life. She cannot remember what her body felt like before her diagnosis. She still feels pain daily but to her that is her new physical normality. And then she experienced that moment...

One day this young woman took an intermediate level yoga class, not usually too challenging for her. At one point the instructor reminded the students to engage in a specific exercise to loosen the wrist joints if experiencing wrist pain. This young woman then asked, "what can we do for ankle pain?" The instructor seemed puzzled and concerned. He told the woman to speak with him after class. It was clear to this woman that wrist pain was normal given the particular exercises that the students were doing in the class, but ankle pain was not! This was that moment! At this moment, this woman recalled that her pain is not something everyone else experiences; that this discomfort is not the normal state of her body; that this pain is a result of her arthritis. This moment felt painful, not in the physical sense, but in the deep emotional sense of the reminder that she is living with a chronic illness. When she spoke with the instructor after class and told him about her condition, he did not know what to say. He was not familiar with joint pain due to illness, only the run of the mill pain people experience when practicing yoga. This highlighted for her that her discomfort was certainly not normal.

What is normal? When talking about normality in statistical terms we are talking about frequency of occurrence in a general population. So in that sense, feeling chronic pain is not normal. But what if we are thinking about frequency of occurrence within a single person? Well then for that person that may be their norm. It is so easy to compare ourselves to other people but it may not always be the most helpful thing. Perhaps in the situation of chronic illness and chronic pain it may make more sense to identify one's own normal and figure out how to best manage that. And of course there will be those moments, like what occurred for this young woman, where you recognize that your own norm is not necessarily the norm of the general public. So what do you do about these moments?

One may initially want to push away the feelings that emerge when realizing that your own norm is not really "normal." However, it can be very helpful to acknowledge and recognize any feelings of sadness or loss that one feels. Trying to push these feelings away may actually keep them festering under the surface for even longer. Once you have acknowledged these feelings then maybe you can think about ways to manage your discomfort so that you can still engage in your life in a way that feels consistent to you. Like this young woman. She may not be able to interact physically the way that she used to, but she hasn't abandoned physicality either. This comes with acceptance.

This acceptance is not a linear process. When living with chronic pain or chronic illness it may take time to discover what your new normality is. However, even then after living a new normal, there will always be these moments that serve as reminders that "my normal is not the norm." It is important to be patient with yourself during these times. You may feel like you thought you had it figured out and now you don't, but give yourself some time to readjust again.

It is not easy living with pain and discomfort, but it is not impossible. Everyone's way of coping is unique and specific to their own life and circumstance. Find what works for you. Create your own norm. And if you need help figuring out what that is, ask for that help from a professional or from people going through similar situations. You may be the only one in a room who feels a certain way  but you certainly are not alone in the world. Connect with others who experience chronic illness or pain, and create new norms together.

Saturday, April 2, 2016

Mommy's Worst Nightmare!

Living with a chronic illness and managing one's own life can be an enormous challenge. A person may have to make accommodations and adjustments to their daily routine, including things like meals, physical activity, work, and social events. This can often feel frustrating and challenging. However, many mothers who live with chronic illness much rather prefer that to what it feels like having to manage their illness while also being a parent.

Being a mother who lives with chronic illness is an experience that can come with many challenges. It can be an extremely physically demanding situation, particularly when one is the parent of a very young child or toddler, or an infant who does not sleep throughout the night. This can make it most difficult for some mothers who live with chronic illness to provide themselves with the rest and care required to manage their condition. Additionally, some mothers living with chronic illness may experience painful emotions, such as guilt for not being able to engage in as much physical play with her child as she would have if not for her illness. Some mothers may feel a sense of loss for not being able to run around the playground with her child like "the others moms in the playground". At times, some mothers living with chronic illness may feel saddened by the fact that they may need significant rest, or have multiple doctor appointments, or therapies that take time away from being with their children.

The experiences described can feel like a mother's worst nightmare. However, despite these challenges, being a mother when living with a chronic condition can be a strength for both the parent and child. Some mothers do their best to care for themselves and strive to keep life going because of their child or children. It is their child that gives them strength that they perhaps did not have before. Similarly, this experience if handled carefully does not have to be all bad for the child either. For example, physical play is not the only meaningful way for a mother and child to spend time together. So perhaps you can't run, but you can read books together, and play with puppets, or maybe sing a song. A mom may really appreciate the time she does have to spend with her child so much more after living with illness because of all the time missed while at doctor appointments. This reality can make the time she has together with her child that much more meaningful. She may really be engaged with her child in a very profound and intimate way.

It can be a challenge to not see the experience of being a mother while living with illness as all bad. And regardless of the positives that you may discover in your relationship with your child while living with illness, you may still experience many painful emotions and feelings of loss. Both are there... the negative and the positive, and pushing away the difficult emotions does not help either. There must be space for both: the recognition and acknowledgment of pain, but also an openness and curiosity to something meaningful and good.

If you are struggling to find this balance, you may want to join a support group for parents who live with chronic illness or reach out to a mental health professional. Sometimes coming to a place where there can be space for both the positive and the negative that come from the experience of being a mother living with illness can be challenging. You do not have to be alone.

Thursday, November 19, 2015

Invisible Illness, I See You. A Short Story

On a rainy November day, my client shares the following account of her experience: “I am invisible and you don’t even know it. You see me, my face, my body, my hair, my clothes but you cannot see the way I move through the world. To you it may look like I am moving fluidly as I stand up to walk across the hall, and yet it takes every last ounce of energy for me to not fall flat on my face. I am so tired but I look awake. I struggle to focus on your words as I desire to sleep. My body aches but I look youthful and strong. I know what I want to say but I cannot access the word. I am not stupid; I am smart but I cannot think straight right now. Yes I have a high-powered job, which most of the time I manage but which also leaves me yearning for my bed at the end of day. No, I am not being flaky when I cancel plans with my friends; I am in pain. You see a healthy, young woman and I feel sick, exhausted, limited, and in pain. No, I am not delusional. I live with an invisible illness. Mine is lupus. Do you really know what that is?”

How do you work with that which you cannot see? What can I do when trying to understand the experience of invisible illness, which does not manifest in my client’s physical presence? How can my client express her momentary process when she cannot use language; when her mind feels fuzzy and she knows the words she wants to share but cannot access them? I wonder if she feels invisible to me. I want to see her. I want to know what it feels like to be her in this moment.  She tells me it is hard to connect to me and what I am saying because she is experiencing a “brain fog,” but she is able to tell me she feels so sick, like she has the flu. Then she shares that it feels like there is nothing else there. She complains that her experience is invisible and that it is frustrating to constantly have to try and make others understand what it is like for her to live with lupus, and that they cannot just take it for face value that she is not well, like they would if she had cancer or depression. I want to challenge her to be more active in explaining to others what it is like to live with lupus so that they can be more understanding. I have engaged with her in this way in the past and it obviously hasn’t worked.

Why do I keep doing that? Maybe I do not want to believe in the reality of this invisibility. I stop myself. I think about how invalidating it must be for people to hear her experience and to constantly forget it based on what she looks like. As a therapist I can easily comprehend why a person who is depressed struggles to find their words or how a person who has experienced trauma dissociates from certain emotions, but what is this experience that my client speaks of, this invisibility of being invisible? Why is this happening?

I wonder if her experience is actually the feeling of isolation and the dissociation that accompanies trauma, in this case the trauma of receiving a chronic medical diagnosis. Perhaps a piece of it is, but that thought does not help me in understanding her experience of invisibility nor in seeing her any more clearly. I associate to the concept of “passing;” passing as physically well when feeling incredibly ill, being viewed as a successful go-getter with no limitations, all the while pushing through the day just to fall into bed with pain in the evening. I think about what it is like for such a person to share with others that her whole body aches as she moves through a seemingly normal life. Who asks her if she needs a seat on the subway or a shortened work day? Who asks her if she is feeling ok? Nobody asks her these things. She has to ask from others, and often times needs to demand. She has to explain repeatedly why she is leaving a social gathering very early over and over, and to the same people. She thinks about carrying a cane as a symbol of her illness in order to avoid these conversations, and at times is even relieved when UV light gives her an occasional rash because it demonstrates that her experience does indeed exist in the world. She is frustrated with constantly having to advocate for herself.

She shares so much. There is nothing for me to understand. There is no hypothesis. There is just description—her experience of being invisible—when living with invisible illness, with lupus. How can I see her if I keep trying to know and figure something out? She is showing me and I am so intent on understanding that I might miss it. I just listen. I cannot visibly see the physical experiences she is describing. I cannot see that her body feels like it is pushing through molasses whenever she attempts to make any movement. I hear her invisibility and I see a moving picture of her experience as she speaks. And in those moments where her “brain fog” interferes with her finding her words, I hold in mind the image that she painted for me when she described at an earlier time what it feels like to have “brain fog.”  I cannot say if this is the correct way and certainly not the only way to work with invisible illness. At times it does not even feel like I am working. However, what I do know is that my client is being seen when I can be humble enough to let her show me. No more being complicit in keeping her invisible with my hypotheses and my own desires to help her. No more fears of really knowing the horrors that our own bodies can bestow. No more invisibility of the invisible illness.

Invisible illness, I see you.   

Wednesday, October 21, 2015

I Am Not Lazy! I Have an Invisible Illness!

"You are a lazy coworker! You are such a flake! Why do you always cancel on me? You are inconsiderate of my time. Why can't you produce as much as your colleagues? Why do you always run late for morning meetings? Are you listening to me? You seem so preoccupied." These are just a few of the comments and questions people who live with invisible illness frequently need to respond to. Yet very few people ever fervently respond with, "I am NOT lazy! I have an invisible illness!"

Invisible illness can be so lonely. A person may walk around feeling very sick, fatigued, clouded cognitively, and utterly alone. It is very difficult for people in this person's life to understand the experience of invisible illness unless this person does a great job communicating what his or her illness is, and even then it may still be a struggle to evoke comprehensive understanding. When people witness a person with an obvious physical indication of illness, such as use of a cane or hair loss, there is a mental click and it becomes easy to acknowledge that there is some sort of medical or physical ailment present. Evoking empathic and understanding perceptions of a person with such visible indications of illness comes much more effortlessly than evoking such feelings towards a person with invisible illness.

There can be something exhausting about having to repeatedly explain yourself to others, if this is something you even choose to do. Sometimes people with invisible illness can feel like the person they are sharing their diagnosis with is not really believing them. Comments such as, "but you don't look sick" can make a person with invisible illness prefer to keep his or her experience to him or herself. Questions of suspicion such as, "how come you had energy to participate in that prior event but this time you don't?" also contribute to an experience of isolation and perpetuate silence. It is easy to understand why people with invisible illness may choose to not disclose their diagnosis with friends, family, or employers; however, this is a big mistake. Staying quiet maintains the idea that people with such conditions are just lazy or looking to manipulate a situation, and even worse it keeps people with invisible illness in a space of aloneness and at times even shame.

It can be extremely difficult, frustrating, and even feel like it is not worth it; however, finding the courage to speak out about what it means to live with invisible illness provides the public with the necessary education it needs to take invisible illness seriously. Yes, even then, some people may never understand but there will be many people who will. For example, brain fog can be a debilitating symptom of many invisible illnesses, particularly autoimmune disorders. Brain fog can be a source of self-consciousness and embarrassment for some people with invisible illness. Imagine feeling like an articulate person, and then on some days struggling to communicate with your coworkers, forgetting to perform certain tasks at work, or appearing confused when speaking to your employer. People may perceive these things as laziness, lack of motivation, or even low intelligence, when in fact they are concrete manifestations of very real cognitive problems. Most people really have no idea what brain fog is. It can feel quite empowering to be able to advocate for yourself and to know that you are more likely to be understood when struggling with a symptom of invisible illness. Additionally, you counter the experience of shame. Hiding and silencing yourself reinforces the false belief that there is actually something to be ashamed of. In reality, you are not lazy, stupid, unmotivated, or trying to manipulate a situation--you have an invisible illness!

Thursday, August 27, 2015

When Not Having Control Takes Control

The experience of a lack of control is common for many people who live with a chronic illness. One may walk around wondering when his/her body will hurt, when certain symptoms will rear their ugly head, when a dreaded procedure or scan may be required, when s/he will have to cancel a very much looked forward to event, when hospitalization will be required, when s/he will take his or her last breath. Feeling as if there is no control over one's body or health, is one of the most frightening experiences a person may have. In fact, it can be so terrifying that at times it may be traumatic, causing a person to think about this loss of control over and over, and maybe even leading a person to create scary scenarios about the future.

Sometimes this feeling of loss of control can overcome a person's thoughts, emotions, and even their actions in life. A person may spend their entire day feeling anxious about all of the things regarding his/her health and body that cannot be controlled. Other times a person may obsessively compare him or herself to others who live with or who passed away from the same illness, and may even be convinced that his/her life will play out in the same exact way. In some way, these repetitive and frightening thoughts, are less terrifying than the reality, which is that the person really does not know exactly when and what will happen to them, and that can usually be the scariest thought of all.

Other times some one may try to create a sense of control by obsessing over mundane details of relatively unimportant things. For example, a person may need to purchase a new outfit for work. This person may spend hours or even days going back and forth between two outfits because it has to be perfect. This person may go over the pros and cons of each outfit, which could delay making any decision. Having a feeling of loss of control due to illness, this person may experience the need to control minor things in daily life, which might seem like a good idea, but which can often leave one with a sense of loss. After all there is no perfect outfit, so either decision will not suffice, and the person may just end up feeling a lack of control once more.

How can one prevent a lack of control from taking control? How can one feel a sense of agency and power in a situation that feels powerless? There are things that can be controlled and it is important for each person to figure out what those things are for them, and to start paying more attention to them. One of those things is choice. A person can control whether or not s/he chooses to take his/her medication. A person can control how and what they wish to communicate to others. A person can control whether or not s/he chooses to let illness become the only focus of his/her life. A person can choose to try or not try to live his/her life in the best way possible given his/her limitations. These are just a few examples and they may seem unimportant or meaningless, but they can be impactful if one really pays attention to each choice they make... you control your choices. Yes options may be very limited but you choose how to handle yourself within those confines.

Think about what you choose to control. Pay attention and you might be surprised. Yes this is not easy at all. It is hard but not impossible. Maybe choose to try.