Girl kissing mother at the hospitalTraumatic brain injury (TBI) is defined as an “alteration in the function of the brain or other evidence of brain pathology caused by an external force,” according to the Brain Association of America in 2011. Defining brain injury has not been consistent in the medical research because of the complexity of the brain physiology. Improvements in technology has helped improve understanding of the brain but there still remain significant unknowns. Science journalist Carl Zimmer describes the brain as:

Nobel Laureate Eric Kandel described the human brain as “the most complex organ in the universe.” Damage to this vital organ can cause significant limitations to a person’s ability to process the activities of daily living and function both mentally and physically. Traumatic brain injury (TBI) happens suddenly but can leave a lifetime of permanent disabilities.

Medical research has not successfully discovered curative interventions to repair the brain to pre-injured status. The lack of proven effective treatments for restoring impairments means focus for interventions is on treating the symptoms associated with the multiply traumatic changes associated with brain injuries. This void in medical treatments indicates the need for psychosocial support for the TBI survivor, the spouse/partner, and family members. The main focus of therapy is 1) to help facilitate adaptation to a changed life, 2) to facilitate a quality of living with limited abilities, and 3) to create a collaborative new reality of well-being.

[fat_widget_right]

Impact on Family Dynamics

Traumatic brain injury does not happen in a vacuum. It is a chronic health issue that affects the entire family. Murray Bowen’s family systems theory explains how traumatic changes to one member of the family cascades throughout the family system. In nature, this is like throwing a pebble into a pond and observing how the water ripples throw out the pond. When one family member suffers traumatic changes, the stress is felt throughout the family system. The established patterns and roles are altered, changing the entire family dynamics. The heighten changes are a major stressor and cause a negative shift in the family’s well-being.

Family members are often described as the “neglected victims” of TBI. Many marriages end in divorce after brain injuries. The loss of an intact family causes further losses for the survivor. The difficulty learning to understand and cope with the monumental changes post injury are some of the reasons there is a need to conduct therapy from a family perspective. The therapeutic process needs to address loss, grief, and adaptation to creating a new life. Maintaining and developing socializations skills as well as a strong support system of family, friends, and a spiritual leader are helpful to the healing process.

‘An Invisible Disease’

There are many challenges to traumatic brain injury that sets it apart from other chronic illnesses. First, it has been described as an “invisible disease” and a “silent epidemic.” It is estimated that 1.7 million people are diagnosed each year. However, these numbers are considered an underestimate because of the lack of visible damages and the subtleties of impairments. The extent of cognitive deficits may not be apparent until much later. The insidious nature of the impairments means family members and professionals may overestimate the abilities of the survivor.

However, trauma to the brain frequently causes pervasive cognitive dysfunction and variety of personality changes, such as impulsivity, anger, fatigue, irritability, unpredictability, and depression. Lack of critical thinking, impaired social perceptiveness, and lack of empathy are also considered hindrances for the lack of awareness the survivor has about his or her own impairments and the decrease in motivation to adapt to a new reality. These problematic issues have a negative impact on martial/couple relationship, family dynamics, and relationships in general. Yet, the research indicates that a meaningful and supportive relationship can contribute to the TBI survivor’s healing from the psychological trauma.

Including Partners and Family Members

The recommended plan of care for the injured person includes psychosocial support for the caregiver, spouse, and family members. The North American Brain Injury Society (NABIS) reports a need for more effective incorporation of family support based on the last decades of research. Marriage and family research has shown that maintaining strong and supportive relationships are integral to helping the survivor cope with challenging changes, as well as for the spouse and family members to adapt to living with a new person.

References:

  1. Bowen, M. (1985). Family therapy in clinical practice. Northvale, NJ: Jason Aronson.
  2. Brain Injury Association of America. (nd).http://www.biausa.org/index.htm
  3. Brey, R. (2006). The silent epidemic: Traumatic brain injury’s massive impact on suffers and society. Neurology Now, 5.
  4. National Institute of Mental Health (NIMH). (nd). http://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml
  5. National Institutes of Health. (2008). Traumatic brain injury: A family finds its way. National Institutes of Health: Medline Plus, 3(4), 2-7. Retrieved from NIH Medline Plus: http://www.nlm.nih.gov/medlineplus/magazine/issues/fall08/toc.html
  6. Nichols, P., & Schwartz, R. (2004). Bowen family systems therapy. In Family therapy concepts and methods (pp. 119-146). Allyn & Bacon.
  7. North America Brain Injury Society, NABIS. (2008). Barriers and recommendations: Addressing the challenge of brain injury in America. Washington, D.C.
  8. Wood, R., Liossi, C., & Wood, L. (2005). The impact of neurobehavioural sequelae on personal relationships: Preliminary findings. Brain Injury, 19(10), 845-851.
  9. Zimmerman, C. (2004). Soul made flesh: The discovery of the brain and how it changed the world. New York: Free Press.

Multiple sclerosis (MS)GoodTherapy | 5 Things You May Not Know about Multiple Sclerosis is a progressive autoimmune disease that results in neurological impairment due to lesions on the myelin sheaths that cover nerve fibers and axons. About 400,000 people in the United States and 2.3 million worldwide have MS.

At this time, we do not know what causes MS. There are many theories, but no concrete explanation to date.

Here are some things you may not know about MS. All data presented are from the National MS Society.

1. MS has four types.

Most people (85%) with MS have relapsing-remitting MS (RRMS) type. With RRMS, people may have one or more symptoms during an exacerbation/relapse, then be symptom free for weeks, months, years, or even decades. When the next exacerbation of the disease occurs, the same person may have a different symptom or set of symptoms from previous exacerbations. Exacerbations are caused by inflammation, known as active lesions.

[fat_widget_right]

Secondary progressive MS (SPMS) occurs in some people with RRMS. For those people, SPMS is considered the second stage of the disease. With SPMS, the remission between flare-ups is no longer present, and people with this type of MS generally have some symptoms at all times. The number of people who will progress to this stage is hard to determine because of the unpredictability of the disease.

Primary progressive MS (PPMS) is the most debilitating type of MS. About 10% of people with MS are diagnosed with PPMS initially. With PPMS, the disease progresses steadily, with no remission. The chronic nature of symptoms in those with PPMS is believed to be related to permanent nerve damage.

Progressive relapsing MS (PRMS) is diagnosed in only 5% of people with MS. With this type of MS, the disease progresses steadily, with some brief remission in the early stage.

2. MS has no cure or treatment, but the progression can be slowed for some with disease-modifying drugs.

Although there is no cure or treatment for MS, those with the relapsing-remitting, secondary progressive and progressive relapsing types often find that intervention with disease-modifying drugs prevents new lesions from forming, thus slowing disease progression and altering the course of the disease. Some drugs on the market can be used to help treat symptoms during a relapse/exacerbation.

There are now 10 disease- modifying drugs for MS, many that have been approved within the past few years. These drugs are very expensive, but patient assistance programs through the pharmaceutical companies can help those who qualify access the medication.

3. MS affects mostly Caucasian women of northern European descent.

For reasons we do not clearly understand, MS is diagnosed in women 2.5 to four times more than in men. It is also found primarily in people far from the equator. People of northern European ancestry, particularly from Scotland, have the greatest risk.

In general, one person out of 750 in the United States has a chance of being diagnosed. Among those with first-degree relatives who have the disease, the risks increase to one in 40. Those who have an identical twin with MS have a one-in-four chance of diagnosis. Some combination of genetics, geography, ethnicity, and possibly an infectious trigger are believed to be responsible for MS, according to current data from the National MS Society.

4. Only about one-third of people with MS use wheelchairs 20 years after diagnosis.

When we think of MS, most of us imagine a person who is unable to walk. MS does affect gait, mobility, muscle strength, and flexibility, but not for everyone. Research shows that only one in three people with MS use wheelchairs two decades following diagnosis. Some use canes or other devices for walking assistance.

An active lifestyle is important for people with MS to maintain their strength and mobility. Adaptive recreation, yoga, hydrotherapy, hippotherapy (horses), and other activities can make a real difference. Many years ago, people with MS were told not to exercise. However,

Jimmie Heuga, an Olympic medalist who was later diagnosed with MS, changed the mind-set in the field of MS treatment about exercise.

One issue to be considered with regard to exercise for those with MS is heat sensitivity. Becoming overheated often triggers a pseudo-exacerbation in which the person experiences symptoms for several hours or days. For this reason, people may need to use cooling equipment when exercising or outside on hot or humid days. MS fatigue is also an issue to be considered, as most people with MS experience this symptom most of the time. Physical therapy can be helpful for people with MS who have muscle spasms, stiffness, mobility, balance, gait, or other problems.

5. People with MS often experience mental health or cognitive impairment.

About 50% of people with MS will experience cognitive impairment. This is most often a problem with executive functioning, such as planning, spatial relations, following directions, working memory, prioritizing, and making decisions. People may one day simply forget how to drive home from work, or get lost going to a grocery store where they have shopped for years. It may take people longer to think of words that they normally use, or respond to questions. These changes can be very frightening.

Depression can be a symptom of MS or secondary to the disease due to lifestyle changes and losses. Depression is not related to the degree of disability. Anxiety is also reported frequently by people with MS due to the unpredictability of the disease. Suicide rates are higher among people with MS than in the general population and among people with other chronic illnesses.

If you know or work with someone with MS, be aware that every person experiences MS differently.

aging manThis evening my local newspaper contained this sad headline: “Maryland couple found dead at home.” A husband and wife, both aged 72, died in an apparent murder-suicide. The wife reportedly had a stroke a few years ago, and the husband’s health had recently deteriorated as well, according to the story. The article quoted friends of the family who said that while the husband was devoted to his wife, he had become overwhelmed by the demands of caregiving combined with his own health problems.

No matter the circumstances, this is a tragic story. While reading it, I couldn’t help but think about the difficulty faced by so many caregivers with whom I have worked. Each one expressed absolute determination to care for his or her spouse without assistance, believing that no one else could do it as well. The loyalty, patience, and nurturing care demonstrated by these individuals are admirable, perhaps even saintly. But nobody, even the most patient person on earth, is immune from the effects of putting someone else’s needs above one’s own day after day, week after week, month after month.

[fat_widget_right]

According to WebMD, caregiver burnout is defined as “a state of physical and emotional exhaustion” resulting from the one-sided nature of caring for someone who is chronically ill. The person who is sick does not intend to burden his or her caregiver, but the nature of being unable to care for oneself creates that one-sided dynamic. The spouse who is caring for the ill person may be happy to take on the responsibility of feeding, bathing, and taking his or her loved one to appointments, knowing that were the situation reversed, the other person would gladly oblige. Even so, constant caregiving for a chronically ill spouse can disrupt one’s life in multiple ways. Many caregivers are reluctant to reach out for help, which puts them at risk of burnout.

Help is out there! Caregivers do not have to feel alone.

According to HelpGuide.org, here are some of the signs and symptoms of caregiver stress leading to burnout:

If you feel that you may have some of these symptoms, please don’t wait to ask for help!

Fortunately, if a caregiver begins to experience some of these symptoms, it is not too late to make changes. The following self-care tips, from CareGiver.org, can reduce caregiver stress and lessen the risk for burnout:

Your local department of aging/disabilities can guide you to the resources available in your community. It’s important for your chronically ill loved one that you are taking care of yourself while taking care of him or her. You can also find help here. The National Center on Caregiving has numerous outstanding resources to help you.

To find a therapist for help with caregiver issues/stress, click here.

woman in beach hatFreshman year of college was a difficult time for me. Many things had changed, I was away from home for the first time, I was not among close friends, and my course load was semi-difficult for me to adjust to. With all that going on, there was a noticeable change to my appearance that I couldn’t identify with. There was a round reddish raised sore on my left cheek. I tried to recall in my mind if I had done something to myself to cause this, but nothing came to mind.

Combing my hair in the mirror also became unnerving, because it had begun to fall out more than that average 100 strands a day. My scalp was visible. I figured out where the hair was disappearing from; I was balding on a section of my scalp.

I knew I had been stressing from school and being homesick, but I couldn’t figure out why my skin and scalp were being affected by my stress. That’s when I really began to panic. My mother suggested I come home so my grandmother, who was a registered nurse, could take a look and see what was happening. I was on the next thing smoking going home.

As my grandmother examined my face and scalp, she was clueless about my condition. She concluded that I needed to see a dermatologist. A couple of days later, I was in the doctor’s office being poked and prodded as if I were a science project.

The diagnosis: discoid lupus. It was determined that I didn’t have systemic lupus—there were traits, but I definitely had discoid. I didn’t understand what discoid lupus was, so my reaction was nothing more than a head nod and wondering, “Now what?”

My dermatologist did not have a sound of urgency or true concern in his voice, so I made myself believe that this wasn’t very serious and I would be just fine. The information that I gained from that appointment was:

I was handed some cream for my face and told my hair would grow back. That was the end of the appointment. I never saw that dermatologist again, and I put the thought of lupus out of my mind.

Almost twenty years passed; my life was moving along. Planning a wedding brought on demanding pressures that I had not anticipated. Day by day, my face began to show signs of redness, and hair was falling out. I believed that I was having an acne breakout and needed to wash my hair because it was falling out.

I had not thought about symptoms of discoid lupus, so in my mind that was not a possibility. Dismissing all the signs, I went on with my wedding and honeymoon, which happened without a hitch. Coming back to reality, I decided it was time to see a dermatologist.

What I feared became true: my discoid lupus had awakened from its 20-year nap. This time it came with a vengeance. Instead of one lesion, I had several on my face and ears, and my scalp was bald in more than one area. Depression began to set in because I couldn’t understand why it came back ten times worse than before.

If I could identify two things I overlooked during both of my episodes, they would be my high stress level and the symptoms I was experiencing at the time. Looking back, I was under some unbelievable stress both times, and I dismissed the rashes and hair falling out as just a natural aspect of my life.

I have discoid lupus, which, whether active or dormant, is for life. I must pay attention to those little things—stress, fatigue, rashes, hair falling out, etc—in order to gain control of this outbreak, which will limit the hair loss and skin abrasions.

As an African-American female diagnosed with a form of lupus, I have pointed out some important factors that I feel everyone should remember:

  1. Know your family history. If someone in your family has a form a lupus, being tested may be wise for you.
  2. Get informed. Asking a professional the 5 W’s is a great way to start to learn as much as you can about lupus:
    Who can get lupus?
    What is lupus?
    When does lupus flare up?
    Where on/in your body does lupus affect?
    Why is there not a cure for lupus?
    The more you know, the better prepared you are for your flare ups.
  3. Pay attention to symptoms you may have and the various changes that may take place with your body.
  4. Be sure to take your medication and visit your physician(s) regularly. Don’t be afraid to ask as many questions as you can.
  5. If you have to be out in the sun, make sure you wear sunscreen or a hat, or use an umbrella to keep yourself protected.
  6. Make sure your family is educated, as well. You should not have to live with lupus by yourself.
  7. Try to make your life as stress-free as possible.

Today, I am happy to report that my discoid lupus is under control. It hasn’t taken a nap, but it’s not wide awake, either. I see my rheumatologist and dermatologist regularly and I am sure to take my medication and stay out of the sun. Although my face has cleared, and my hair is growing back slowly and finely, I still live with caution.

But I feel blessed that I have my life. As an educator, I have taken on the topic of lupus as if it were a thesis paper for me. Research is the main focus to gain a greater understanding. A great place to obtain information about lupus and its various forms is the Lupus Foundation of America.

Genesa Page is a high school business education teacher at Mirabeau B. Lamar High School, an International Baccalaureate World School in Houston, TX. She has been teaching since 2005.

male caregiver walks with elderly manThe work of caregivers is difficult, at best. This is particularly true for those who provide care before they start the workday and after they come home in the evening. I am often amazed by the stories I hear from caregivers.

I recently learned something from a group member that I want to pass along to other caregivers. It is so simple that it may seem unlikely to make a difference. But don’t let the simplicity of it fool you—the people in our group totally got it when she talked about it. Had I tried to teach it to them in the language of a therapist, I doubt the result would have been a collective “wow.”

Managing Resentment and Anger as a Caregiver

The question of how to manage resentment is frequently a theme in our support group. Caregivers grapple with guilt about experiencing resentment—both regarding the unfairness of being thrust into the role of caring for their partner or spouse, and about spending more time as a caregiver and less as a partner/spouse.

Most are clear that the resentment and anger they feel is directed toward the ailment or disability, but we all know how easy it is for our anger and resentment to spill over into other areas or be misdirected. The last thing most caregivers want to do is allow their resentment or anger to taint their relationships with those they care for.

Someone in our group raised this issue again recently: How do we deal with the seething resentment that we feel? How do we prevent this rage from spilling over into our relationships?

It was clear that everyone in the room knew what he was talking about. Everyone responded with the perfunctory nods of agreement and reminders to breathe, be grateful, and hang in there. These are veteran caregivers who already do most of the things recommended for self-care: exercising, setting boundaries, eating well, getting as much rest as possible, etc. The urgency of their desire to address this issue was apparent.

How Do We Change Our Feelings?

Luckily, one of the women who had asked the same question in the past spoke up. She shared that she had intuitively discovered something that helped. She talked about how she had automatically shifted her feelings one day while helping with an unpleasant task. This generous soul has granted me permission to share this with you.

What my friend found was that by focusing on the process of what she was doing—by mindfully paying attention to each tiny step in the task at hand—she was able to change her feelings. She inadvertently alleviated the resentment and dread!

She changed her thoughts from, “I hate this; this is horrible. I can’t believe I have to do this every day and night for the rest of my life” to, “Okay, now I need to do this… put this here, then take it over there. Next I do that… yes, like that. Oh, that was much better than last time.”

As she explained it, my friend was able to “relax her brain, much like releasing a tightened fist.” By relaxing her brain, she was able to release the resentment and dread. She described it as letting go—releasing the breath that she had been holding. And in doing so, she discovered how to give up her resentment and anger.

Attention Is Key

Remember that when you truly focus your attention to the task, the switch to thinking mindfully about your action results in a change in your feelings and behavior. By forcing her attention to the minute processes of her admittedly unpleasant task, my friend also gained control over her emotions. She stopped the negative thoughts. Your mind can only hold one thought at a time. What you choose to think about creates your emotions.

It is your choice. Choose to focus on the process—the actions. That is mindfulness. By changing your focus to each step of the process (whether washing dishes, filing, changing a catheter, or meditating) you are also altering your feelings.

It takes practice. Begin with something easy, like learning to laser focus on your breathing. Feel the air going into your nostrils, your stomach rising, the air moving through your head and into your lungs, and then moving back up and out of your nose.

Next, try mindfully taking a bath or shower. Feel the water on your skin, smell the soap… feel the cloth in your hands and your hands moving over your body. Don’t allow your mind to wander to other things. Keep it contained in the actions and senses.

Finally, try this when doing a difficult task. Make your thoughts about what you are doing step by step. There is no room for thoughts that create dread and resentment.

Try it, and let us know how it works for you!

Two teen girls with disabled brotherWith the magnitude of demands placed on special needs families, siblings of special needs children can often feel overlooked and in need of emotional support. A “special needs child” is defined as having a medical, developmental, or neurological challenges, or another type of disability which impacts the entire family system, thereby requiring special supports (i.e. medical, educational, etc.). In many families where such challenges are present, it’s inevitable that the added stress impacts not only parents and the child in question, but also typically developing siblings. In fact, rates of depression, anxiety, and chronic stress are higher for the special needs family. But with adequate supports, such impediments can be reduced. Special needs disabilities can run the gamut from severely disabling conditions, such as cerebral palsy, in which a child is wheelchair bound and cannot speak, to a high-functioning child with an “invisible” disability, such as attention deficit (ADHD) or dyslexia.

Special needs siblings may feel the following:

Your child may benefit from a referral to a competent and compassionate psychotherapist who specializes in special needs family therapy. It is of vital importance to special needs parents is to look for the following symptoms in siblings of special needs children:

Likewise, if any parent/caregiver exhibits the above symptoms, I recommend seeing a family psychotherapist as soon as possible.

There are also many benefits and unique experiences for siblings of special needs children, however. They have the opportunity to learn caregiving and sensitivity that many of their peers may not experience.

Special needs siblings may also feel the following:

It is true that there are an equal or greater number of positives and opportunities for the special needs sibling, when given the appropriate support and resources. Several websites and references are listed at the end of this article to support the special needs sibling in acquiring appropriate support to thrive and embrace being a special needs family member. The following objectives are also of great importance for special needs parents, in an effort to ameliorate the stress involved with being a member of a special needs family:

Most importantly, keep communication open with regular family meetings to problem solve about communication issues, chores, etc. Then take the opportunity to play a family game, laugh, dance, sing, and bond. As parents, keep a positive spin on being a special needs family; your situation does not have to be one of drudgery.
On the contrary, with the right resources and supports in place, life can be deeply meaningful, full of purpose, and imbued with unconditional love. Gifts and talents not detected before are discovered and embraced. Life can actually be beautiful. It is up to the parent to set the tone, to take the “emotional read” on the family, and link the family up with resources and supports, which make a world of difference in supporting the emotional health of the special needs family.

Resources for special needs siblings:

  1. Siblingsupport.org: for a listing of support groups for special needs siblings and how to get a group up and running in your community
  2. Thearc.org: sibling support network
  3. med.umich.edu/yourchild/topics/specneed.htm: University of Michigan link for special needs families
  4. friendshipcircle.org/blog/2013/04/25/the-importance-of-parental-support-and-guidance-for-special-needs-siblings/: Article with resources for sibling support The Friendship Circle website
  5. nytimes.com/2001/03/06/health/06SIBL.html: Article from New York Times (2001) in support of special needs siblings
  6. Meyer, Donald and Vadasy, Patricia. (2008). Sibshops: Workshops for Siblings of Children with Special Needs (Revised Edition), Brookes Publishing Co.
  7. Meyer Donald. (1997). Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs, Woodbine House.
  8. Meyer, Donald. (2005). The Sibling Slam Book: What it’s Really Like to have a Brother or Sister with Special Needs, Woodbine House.
  9. Bleach, Fiona. (2002). Everybody is Different: A Book for Young People Who Have Brothers or Sisters with Autism
  10. Gordon, Michael. (1992). My Brother is a World-Class Pain: A Sibling’s Guide to ADHD-Hyperactivity
  11. Stuve-Bodeen, Stephanie and Devito, Pam. (1998). We’ll Paint the Octopus Red
  12. Choldenko, Gennifer. (2004). Al Capone Does My Shirts
  13. The Sibling Information Network Newsletter: for quarterly support for special needs families

Individuals with Parkinson’s disease (PD) often have personality features that mimic those found in depression, anxiety, and even obsessive compulsion (OC). Behaviors such as extreme punctuality, perfectionism, rigidity, harm avoidance, and unwillingness to seek out novel experiences are common in all of these illnesses. New research has begun to explore whether or not any of these personality types are common in people with PD and, if so, whether any of these traits act as predictors of PD, or merely comorbid symptoms. To look at the relationships between PD and personality traits further, Alessandra Nicoletti of the Department of Hygiene, Public Health, and Neuroscience at the University of Catania in Italy recently conducted a study involving 100 clients with PD and 100 without. She evaluated the personality traits of all of the participants and found that OC was present in 40% of the PD participants and 10% of the non-PD participants.

Nicoletti noted that OC personality and Parkinsonian personality both present with similar cognitive and behavioral traits. She believes that even though there is an overlap in symptoms, it has not been shown that OC personality predicts later Parkinson’s. However, some research has suggested a predictive quality in OC personality for future OC. Nicoletti believes the shared traits present in both personality types are the result of similar neurological circuitry, rather than genetic predisposition to Parkinson’s.

The second most common personality type was depressive, accounting for 14 PD participants and four control participants. This personality is characterized by avoidant behaviors and negative affect, which can also be present in individuals with PD alone. Nicoletti added, “Considering the well known high prevalence of depression among the PD patients, we are aware that in some case distinguishing between these two conditions can be difficult.” She hopes that future work will examine this personality type and others more thoroughly in order to establish whether they provide an early indication of Parkinson’s risk or they merely exist as comorbid conditions.

Reference:

  1. Nicoletti, A., Luca, A., Raciti, L., Contrafatto, D., Bruno, E., et al. (2013). Obsessive compulsive personality disorder and Parkinson’s disease. PLoS ONE 8(1): e54822. doi:10.1371/journal.pone.0054822

Man in wheelchair at gateMany who live with disabilities are burdened by a chronic sense of shame that can be as difficult to live with as the actual disability. Shame is not the same as guilt. Shame is persistent and represents how we feel about ourselves (“I am a shame and disgrace”) rather than how we feel about something we did or did not do (“I feel guilty and embarrassed”).

The term “ashamed” is often used interchangeably with “humiliated.” Shame may be the result of humiliation, but not humility. Humiliation entails stripping a person of his or her sense or worth—of wounding the person’s very being. Humility is more a sense of meekness or equality with others. Dr. Brené Brown has been researching shame and vulnerability for a few years, asking people how they experience shame. Many say it makes them feel small and vulnerable; it includes an almost physical sensation of being kicked in the gut; it takes them to place that feels wounded; and they want to disappear.

How does this happen? How do we begin to feel wounded? Small? Vulnerable? Shamed? Humiliated? It is usually a response to something that happens to us—that is done to us. We are somehow victimized, humiliated, or traumatized by the actions of a person or people who inflict injury upon our sense of self—our very being.

This wounding may be intentional or inadvertent: The shame of a child whose first-grade teacher refused to allow her to go to the bathroom, resulting in an accident in her clothes in front of the whole class. The man who can’t read well enough to complete a job application being verbally harangued by an uncaring receptionist in front of an office full of people. A person in a wheelchair who is “holding up the line” for an elevator when a busy executive is in a hurry. The family with an older autistic child boarding an airplane in advance while others accuse them of making excuses to avoid waiting.

Regardless of the source, this pervasive sense of shame can result in a lifetime of fear, avoidance, and anxiety when faced with issues that trigger similar feelings. The triggers may be subtle and seemingly unconnected, but that feeling of being diminished remains.

For the first-grader who was humiliated by the refusal of her teacher to allow her to go to the bathroom, triggers may transfer to a dislike for authority figures, issues with toileting, or avoidance of school.

The man with difficulty reading who was humiliated by the lack of awareness or disregard of the receptionist may avoid looking for work, find that he is defensive with people working in offices, or resist going to the doctor if it requires filling out forms.

A person in a wheelchair who was humiliated due to holding up the elevator and inconveniencing the busy executive may avoid leaving home, resist taking the safety precautions necessary in a busy location, or feel “less than” people in white-collar jobs.

The family of the child with autism may avoid traveling by plane, become defensive when in need of special treatment, or limit interactions with people waiting in line.

I recommend that those who have feelings of shame learn more about the causes and triggers by getting professional help to address these feelings. Two types of therapy—EFT (emotional freedom technique, aka tapping) and EMDR (eye-movement desensitization reprocessing)—may reduce or eliminate shame reactions.

Kaethe Weingarten of the Department of Psychiatry at Harvard Medical School recently published a paper describing her experience with four clients who experienced chronic sorrow. The clients, who were all successful, vibrant women, had different pasts and different conditions that caused them to lose their sense of self. Despite these differences, the result was the same for each. They struggled with a sense of deep sadness or chronic sorrow. In one’s case, illness had caused her to lose her independence and ability to live the life she once knew. Another woman became addicted to medication that was prescribed to treat a health problem. The addiction led to psychosis that lasted two years. The third woman was born with a heart defect and has lived a life of longing to be the woman she knows she cannot be. The fourth woman was diagnosed with Chronic Fatigue Syndrome. After over a decade of being doubted by family members, medical professionals, and even therapists, this client eventually committed suicide.

Weingarten, having dealt with her own disability, is all too familiar with the shift from a life of autonomy and ability to one of utter dependence and incapacity. She believes her own experience and those of her clients gives her an insight into chronic sorrow and how to best approach this issue with patients. First, Weingarten believes that chronic sorrow is rooted in a loss of self. The self-narrative of those living with chronic sorrow becomes shattered, dissociative, and disrupted. This can happen as a result of one catastrophic event, such as a debilitating medical diagnosis, or a series or progression of events and symptoms, as was the case for the client with Chronic Fatigue Syndrome. Regardless of how it occurs, this broken narrative is not one that can be fixed. Instead, Weingarten believes that companionship and compassionate witnessing are the keys to living with, and not necessarily overcoming, chronic sorrow.

She believes that witnessing requires developing an empathic understanding of a client’s situation and taking actions to alleviate the psychological pain that ensues. Rather than trying to fully understand, a compassionate witness should accept that they will never fully be able to feel the feelings or loss of their client. Instead of pathologizing and labeling these clients’ reactions to loss of self as bipolar, schizophrenic, or psychotic, a truly compassionate witness will empathize without ever really understanding. “People who live with chronic sorrow need accompaniment,” said Weingarten. By this, she means that clients with chronic sorrow need someone to be with them as they discover how they will interact with the limitations of their minds and bodies. It means showing them the way to peace, teaching them how to tolerate the inconsistency of their lives with support, education, and even humor. It also means requires self-care so that the therapist can be aware of the client’s own boundaries while they take this journey with their client. Weingarten does not believe chronic sorrow can be fixed or healed. But she believes it can be lived with and she suggests compassionate witnessing and companionship as ways to do that.

Reference:
Weingarten, Kaethe. Sorrow: A therapist’s reflection on the inevitable and the unknowable. Family Process 51.4 (2012): 440-55. Print.

Woman in a wheelchair looking sadThe uninvited house guest often stays on well beyond the point of “wearing out his or her welcome.” Likewise, for many people, chronic illness/disability is not a short-term inconvenience but rather a long-term, often permanent way of life. In the early stages of adaptation, the changes that happen in our lives and families may seem tolerable—at least while we still think there is a chance that the diagnosis is wrong or the cure is in the magic pipeline offered by big pharma.

Eventually, denial and bargaining give way to anger and depression. The uninvited guest is still ever-present, and no amount of cajoling or suggestions result in change. Bouts of anger may become a way of life for a while.

Anger
Many people flow in and out of anger and depression, rather than progressing neatly through one stage and into the next. It is often said that depression is anger turned inward, which makes expression of anger in a safe and effective way very important. Getting adequate support from formal and informal support networks is critical.

It is not unusual for tempers to flare and fuses to shorten during this period of adjustment. People who are typically long-suffering seem to be constantly on edge; those with fewer coping skills may be in a chronic state of agitation and irritability, if not outright rage. It often seems as if they are pushing away those who are closest to them at the time when they need them most.

Loved ones may unconsciously spend less time with the person who seems to find fault in their best efforts. Children are often left confused and afraid. Doctors and other providers frequently find themselves being blamed for their inability to help. This is all part of the process of adaptation.

While most people understand cognitively that their loved one is struggling and coping as well as can be expected, their own feelings of inadequacy and powerlessness may lead them to retreat on some level—if not physically, then emotionally. This often feels like abandonment to the person who is already overwhelmed by disability or illness. It is very important for caregivers and loved ones to be aware of their own feelings and find support.

Coping skills: Separate the person from the behavior. Try to remain aware of the real target for your anger—the illness or disability, not the person in your midst. Remember that we often treat those we love the most with the least respect; make amends as soon as possible if you do so. Give each other a break and extend the benefit of the doubt when possible. If your loved one treats you badly, remember that everyone is under extreme stress and doing the best they can at that moment. It is also good to remember that your caregivers and medical providers are probably not inadequate, but the resources they have to work with may be.

Caregivers and loved ones should speak up if they are being treated badly. Being sick is not an excuse to mistreat people, particularly if there is a pattern of abusive behavior developing. These behaviors need to be identified and discussed in a calm, loving way (not in the heat of the moment). This may require professional help, or perhaps the assistance of a minister or family friend who is not emotionally involved.

Most of the time, the person who lashes out or treats people badly feels guilty and needs the opportunity to make amends. For those who are unaware of how their behavior comes across, specific examples of the unacceptable behavior or hurtful/abusive language helps them develop a better awareness of their inappropriate behavior. In some cases, this is a manifestation of the illness or disability. In others, it may be the result of coping skills that are maxed out. Either way, left unattended, it usually gets worse. This is not the time to let conflicts and hurt feelings stack up. If you need help addressing these issues, ask your medical provider for a referral. Providers often have therapists or chaplains they work with who may be able to help.

Depression
Depression often occurs during the adaptation process, and may happen at other times or continue. Clinical depression can be very difficult to manage. It is more than sadness or disappointment; depression is a collection of symptoms that exist most days for two weeks or longer and create some level of impairment in daily functioning. The symptoms may include many of the following:

If you or someone you know have four or more of these symptoms that are present for more days than not over a two-week period, talk to your medical provider about getting help.

There is also a type of depression called situational depression that is a normal reaction to a loss or change. Almost all people with chronic illness or disabilities and their loved ones experience this. The same symptoms are involved, but the symptoms may not be present most of the time, or may not be severe enough to impair your ability to function (relationships, work, taking care of your kids, etc.).

Situational depression can linger or become more serious after a while, becoming clinical depression. If the symptoms begin to impair functioning or last longer than a few weeks, it is wise to speak with a medical provider or therapist. People with situational depression are often able to experience periods of happiness when receiving good news, or other momentary reprieves from the darkness of depression. Those with clinical depression may be unable to experience even brief moments of relief when the situation calls for it.

The best treatment for depression is believed to be a combination of talk therapy, exercise (I know—it is very hard to exercise when you are depressed), a good diet, and medication, if deemed medically necessary. The right intervention for depression depends on which type of depression you are experiencing. For those with a few symptoms that are not present all the time, self-help may be sufficient. People with four or more symptoms that are present most of the time probably need to see a therapist and possibly a psychiatrist.

Anyone who is suicidal should seek professional help immediately. This national hotline is for people struggling with depression. The crisis line is staffed 24 hours a day by trained volunteers: 1-800-273-TALK.

Coping skills: I recommend that people talk with a therapist when dealing with situational depression and try to get as much activity in as possible. This may mean simply walking outside to get the mail, sitting on the porch for 20 minutes to have a cup of coffee or juice, watering the plants, or walking the dog. Sunshine is another natural remedy that increases vitamin D, which is often deficient in people who are depressed and those who do not go outside often. Eating properly is also critical, and there are natural supplements available at your local health store that may help with situational depression. Talk to your medical provider or therapist about these options.

Support groups and self-help groups can be very helpful. Groups provide a great resource for people living with chronic illness and disabilities and their loved ones. You can find online and local resources, and most are free. Many are affiliated with local hospitals or nonprofit agencies that serve people with chronic illness or disabilities.

If depression is serious enough to impair functioning, or you/your loved one has thoughts of suicide or not wanting to live, it is important to get professional help immediately. Start with your medical provider or therapist unless the person with depression has a plan to cause self-injury or death.

In situations where someone’s safety is at risk, call 911 or the local emergency number for your area, or take the suicidal person to the closest emergency room. Your role in the situation is not to intervene, but to get professionals involved as soon as possible. If the suicidal person is unwilling to go to the ER (or medical provider’s office during business hours) or you believe it may be unsafe to transport them, simply call for the emergency medical providers to come to you.

Don’t worry about the person who is suicidal being upset by your actions—when people are in crisis, they are usually not thinking clearly, so it becomes crucial for you to make good decisions on their behalf. The medical professionals who are trained to help in these situations will make the decisions once they arrive. This will likely mean that the person who is suicidal will be transported to the hospital for an evaluation, and may need to stay there for a few days until stabilized.

Again, it is not up to you to make that decision, only to make sure the person is safe until medical professionals can take over. It is a lot of responsibility and instills fear in most of us, but in the end, when your loved one is thinking rationally again, he or she will likely be grateful. If not, you will know that you have done what you needed to during the crisis.

Ongoing thoughts of suicide or not wanting to live need to be addressed with mental health and/or medical professionals regularly. Some states (Washington, Oregon, and Montana) permit medical professionals to participate in a well-thought-out, documented plan to end life (known as rational suicide), but most do not. Discussion of a patient’s end-of-life wishes should also be considered carefully and documented in a legal document for your specific state. Legal resources such as a living will specifically identify a person’s end-of-life wishes.

It is a good idea to talk about signing a consent form that allows you to discuss your loved one’s mental health (and physical) treatment with medical providers and therapists. This will enable you to enlist their help if depression becomes unmanageable or a crisis occurs. The consent can be relinquished at any time if the patient is considered to be of sound mind, and could be a great resource. Fortunately, resources are available to assist you in being prepared for a suicidal crisis should you need them.

There are many issues to be discussed regarding suicide, including family members’ thoughts and feelings about it. It is important to remember that euthanasia is against the law in all U.S. states, and assisted suicide with the help of a physician who prescribes a lethal cocktail after careful planning and documentation is legal only in Oregon, Washington and Montana. Legal professionals should be consulted if “rational suicide” is something you or a loved one is considering.

Adaptation
Using the analogy of the uninvited house guest, this is the period when people have settled into their routines and learned to live together with whatever adjustments are necessary. The initial period of adjustment after a disability or illness almost always requires going through each of the stages in the process outlined here. It can take a long time for some to arrive at adaptation, and not everyone in a family gets there at the same time. With some luck, a lot of support, good communication, and teamwork, the process will likely resolve in time for most people.

Unfortunately, surviving the initial period of adjustment does not ensure there will not be others. As mentioned earlier, people tend to get emotionally triggered when there are relapses or new symptoms/stages of the illness or disability occur. Triggering means that some reminder of the initial trauma (usually diagnosis or the actual accident or illness) sets off the same cascade of emotions experienced at the time of the original event.

Living in fear of a relapse or a change in physical status creates a certain amount of anxiety for everyone. The unpredictability of living with a chronic illness or disability will be the focus of our next article.

In the meantime, please share below how you have effectively coped with anger and depression.

Man watching female coworkerDepression makes it difficult to function in daily life, but adding discrimination to the equation makes it even more troublesome.

A new study in the journal The Lancet stated that out of the 1,082 adult participants with major depressive disorder, 79% reported that they have experienced discrimination. People who experienced discrimination while depressed had more depressive episodes, social difficulties, and issues finding and keeping a job. They also were less likely to reveal a diagnosis of depression.

These results suggest that more works needs to be done in the area of preventing discrimination and eliminating stigma. Discrimination can prevent people with depression, who may be worried about disclosing their diagnosis, from getting the help they need. While getting a job and growing social networks can help fight depression symptoms, those pursuits become more challenging in the face of discrimination.

How, specifically, does discrimination affect people with depression? How can the general public be more understanding? And what options do people with depression have? Mental health experts and other professionals have some answers.

Dr. David Sack, CEO of Elements Behavioral Health and Promises Treatment Centers, said by email that sensitivity toward people with depression often is lacking.

“The most common example has to do with intolerance toward peers/friends/relatives that comes from not understanding that depression is a disease that the individual cannot simply will themselves out of,” he said.

Sack said a supervisor might question an employee’s motivation and commitment due to symptoms of depression, even if those symptoms don’t reflect how the employee really is.

“How often have we heard that this or that person claims that they are depressed just so they can get time off from work or won’t have to take responsibility for mistakes they’ve made?” Sack said.

Although many people know the basics of depression thanks to widespread awareness initiatives, prejudice, bias, and stigma still are rampant.

Viola Drancoli, a clinical psychologist, said in an email that friends and family members of people with depression might exhibit discriminatory behavior with them because they may feel drained from being around someone who expresses sadness, pessimism, irritability, and a lack of motivation.

This could push someone with depression into isolation. A person with depression might prefer being alone so he or she doesn’t have to attempt to hide feelings from others.

“The social isolation often starts a vicious cycle in which the (client’s) negative outlook on life is reaffirmed, they feel let down by family and friends, and symptoms may worsen,” Drancoli said. “This is especially dangerous for individuals who have suicidal ideations and need support and monitoring.”

Drancoli said it’s important for family and friends to be supportive. She suggests volunteering to help out with chores that might be difficult for someone with depression to complete when he or she is struggling to function, as well as patiently listening without judgment. Loved ones can gently encourage a person with depression to exercise as well, as this has been shown to boost mood.

People with depression who believe they have been discriminated against have the law on their side. Sack said that discrimination against people with any disabilities, including mental issues such as depression, is forbidden by the Americans with Disabilities Act. The civil rights law, enacted in 1990, defines disability as “a physical or mental impairment that substantially limits a major life activity.” Some states have additional laws against discriminatory behavior.

“An individual who is concerned about discrimination at work will want to speak with their supervisor or the director of human resources first,” Sack said. “Most companies have strong policies to promote fairness and nondiscrimination.”

Justine Lisser, a senior attorney advisor in the Office of Communications & Legislative Affairs at the U.S. Equal Employment Opportunity Commission, said by email that if an employer has at least 15 employees, it must abide by the ADA. Employers need to provide “reasonable accommodations” for people with disabilities, as long as the employer isn’t deeply burdened as a result.

“For example, if a person with depression is hired for a position that requires an 8 a.m. start time, but due to the effects of (antidepressant) medication the person could not start until 10 a.m., it would be a reasonable accommodation to permit the employee with depression to start at 10 a.m., assuming that it would not cause an undue hardship for the employer,” Lisser said.

The EEOC has successfully enforced employee discrimination laws in a few cases involving people with mental health issues. In one case, a sales associate at a video retailer experienced harassment because of his social anxiety disorder and depression. His employer was ordered to pay $70,000 to settle the discrimination suit, according to an EEOC press release from March 2012.

silhouette man pushing woman in wheelchair 2

There are many parallels between living with a disability and dealing with an uninvited house guest. If you have ever had an uninvited house guest, I am sure you remember moments when things may have been uncertain and, at times, tense or uncomfortable. At the very least, having an uninvited guest requires some adjustments, much like living with a disability.

An uninvited guest may arrive unannounced, leaving no time to plan or prepare. Likewise, in many cases people living with disability have little or no time to plan for the many changes to come. While there may have been no way to prevent the disability and requisite life changes, having time to prepare—psychologically and literally—can make a huge difference in a person’s ability to adapt and cope.

A period of psychological adjustment is required for a person who has a disability, his or her spouse/partner, parents, and other family members. The adjustment process people frequently talk about resembles the grief process in many ways. Like the grief process, people often experience feelings in what seem to be stages. Similar to the grief process, this adaptation process usually begins with a period of denial.

Denial
In my work with couples and families living with multiple sclerosis, I often hear concerns that one person seems to be “stuck in denial.” To people who have moved through the initial denial stage, it may seem as if their loved one is not progressing as quickly as others. The truth is, different people work through this period of adjustment differently, and it takes as long as it takes. The denial stage usually happens at the time of diagnosis or disability, and may come up again at other times. For example, in a progressive illness, if one begins to lose mobility or other limitations arise, the initial stage of the adjustment process may be triggered again.

It may seem clear to a caregiver/partner or family member who has been helping someone walk even short distances that a mobility device is needed (cane, walker, scooter). For the person who is having mobility difficulty, admitting that it is time to talk to a doctor about a mobility device may affect his or her identity, hope for recovery, or future progress. If so, working through the denial and bargaining, and then later stages of adaptation, may be necessary. It is not unusual to see all members of the family triggered by new developments that start the process over.

Denial is believed to be a protective measure that prevents us from becoming emotionally overwhelmed. Denial slows down the process of coping with traumatic events, giving us more time to psychologically prepare ourselves for the onslaught of feelings. The process of denial, known as a defense mechanism, should not be rushed or sabotaged by well-meaning loved ones who are at a different place in the adaptation process. Doing so can cause the person who needs more time to become emotionally overwhelmed without the necessary skills to cope effectively.

Coping skills: A person with disability and his or her family members should try to be empathetic and understand things from the perspective of others. Be honest, but gentle, about your perceptions. Choose the time to discuss these issues carefully—not when either of you are tired, frustrated, or angry. Always talk to your loved one(s) before bringing up concerns with doctors or other professionals.  Caregivers and family members should keep in mind that their needs are important, too. Take care of yourself and make sure you have plenty of support. When children are involved, be very careful what and how you share information with them. Children need to hear things based on what is appropriate for their age and stage of development. Ask for guidance from a professional if you are unsure how much to tell children or how to talk to them about disability.

Bargaining
The stage that usually follows denial is bargaining. During this time, people often are looking for second opinions, alternative therapies, and other remedies. It can also be a time when we promise the gods that we will turn our lives around if given a second chance without the disability or diagnosis.

It is true that finding the best medical providers, keeping a positive outlook, and staying informed of new research and possibilities is important. However, this can also be a time when people are vulnerable to scams and false promises. Unfortunately, there are a lot of companies and people who offer products and services that guarantee outcomes without doing the necessary research required to back up those assurances.

It is a good idea to check out any new or experimental treatments carefully before trying them—particularly if there is a large commitment of money, resources, or time involved. Check with local and national nonprofit organizations that provide services to people with your specific issue or health challenge. Agencies such as the National MS Society, American Cancer Society, and others often have information about ancillary and alternative therapies. They may be able to send you information or answer your questions.

Coping skills: Make decisions together based on facts. Find local and national organizations that you trust to support you and provide well-researched information. Be sure that any second opinions or ancillary providers have access to all the information you have from other providers. In some cases, taking medications or treatment without being fully aware of how they interact with your other treatment can be life-threatening. Make a commitment to fully investigate any new or experimental treatments before deciding to try it. Ask for and check references when appropriate. Verify the credentials of all providers before visiting them. At some point, you may have to accept a new reality that you had not planned for and do not welcome. If you have prolonged difficulty coping with the diagnosis or prognosis, find support from a professional or support group to help you with the transition.

Over the next few months, I will explore additional aspects of disability, how it affects the lives and relationships of the people involved, and ways of coping with these situations. If you have ideas to share about how you have effectively coped with any of the situations presented, please join the discussion by leaving comments below. Likewise, if you have questions, feel free to ask for input from others who read the blog.

Important Notice

GoodTherapy is not intended to be a substitute for professional advice, diagnosis, medical treatment, or therapy. Always seek the advice of your physician or qualified mental health provider with any questions you may have regarding any mental health symptom or medical condition. Never disregard professional psychological or medical advice nor delay in seeking professional advice or treatment because of something you have read on GoodTherapy.