Invisible Illnesses

pick 2

Credit: Abby Gullerud @ https://mommyandbeast.tumblr.com/

Yesterday I had a conversation with a friend who shared some of her experiences with a chronic illness that on any given day leaves her in varying degrees of pain and which saps her of her strength and energy physically, socially, mentally and emotionally.

Later that day, I came across a new webcomic, created by a very talented former college roommate, illustrating some of her experiences being married to a man with an unidentified illness that similarly leaves him in great pain and deprives him of strength and energy.

In my clinical work as a therapist, I have worked with many clients who struggle with invisible diseases, the most common being depressive and anxiety disorders.  I’ve also noticed that many who come in with depression also are affected by invisible disorders of pain, including chronic conditions such as arthritis, fibromyalgia or lupus.  A chronic disease refers to an illness that is ongoing and incurable.  Many chronic diseases are manageable, while some chronic diseases are less understood and more treatment resistant, as is often the case with certain pain disorders.  The National Institute of Health, on a fact sheet on pain management noted the following:

  • Chronic pain is the most common cause of long-term disability.
  • Pain affects more Americans than diabetes, heart disease and cancer combined
  • Pain can be a chronic disease, a barrier to cancer treatment, and can occur alongside other diseases and conditions (e.g. depression, post-traumatic stress disorder, traumatic brain injury).

One client who struggled with multiple chronic conditions, including pain disorders and depression, introduced me to the idea of “Spoon Theory”, which she considers a helpful way to make sense of and explain the limitations she encounters due to her specific health issues.

“Spoon Theory” originated from a blog post written by someone with a chronic illness who recounted a conversation with a friend at a restaurant.  Her friend wanted to better understand what she was experiencing.  In an attempt at explaining, this woman gathered up as many spoons as she could find and handed the bouquet of utensils to her curious friend.  She explained that that cluster of spoons represented her available energy for the day, and that when the spoons were gone, that there would be insufficient physical, mental, emotional or social energy to function for the remainder of the day.

She then had her friend detail the events of her day.  When she referenced getting showered, a spoon was taken.  When she referenced putting on make-up, a spoon was taken.  Doing her hair?  A spoon was taken.  Cooking breakfast?  Another spoon.  Doing the dishes?  Another spoon.  Drop the kids off at school?  Another spoon.  By the time the morning routine was completed, very few spoons remained.  At that point the challenge and reality of decision-making became more evident.  Do you answer the phone at the expense of another spoon, or try to save energy to help the kids with homework after school?  Do you tidy the house, or take it easy in hopes that you will be able to make the family dinner?  To overstretch one’s self on a given day means feeling the effects of it and having fewer “spoons” available the next day.

While this theory isn’t scientific, many identify with the idea of having a limited amount of energy that has to be rationed in order to maintain any sense of staying functional.  This strategy is consistent with the scriptural counsel, “It is not requisite that a man should run faster than he has strength”.  My former roommate represented the struggle her husband faces in the image above, showing that he may start out the day with only two figurative spoons.

In addition to the pain and difficulty inherent in such conditions, those who personally struggle with such illnesses know the challenge and pain of interacting with those who cannot see or understand their conditions.  Because these illnesses are invisible, and because they do not go away, it is difficult for others to understand their struggle, to know how to act, or to make sense of these challenges that their family members, friends, church members or community members may be struggling with.

So, what should someone who wants to be supportive understand, and what can they do?

Understand and accept that the struggle is real

People struggle to accept and understand what they don’t see.  It is easy to doubt that a condition is real, and it is easy to forget, especially if you only see people on their good days when they appear to be functioning normally.  It is important to respect and trust your loved one enough to accept that their experience is real and valid.  Don’t assume that they are faking or that it is “all in their head”, and don’t assume that it will go away or that it must have gone away by the time you see them again.

Understand that this is a problem that you can’t fix

All with the very best of intentions, of course.

 

Many people are natural fixers.  They like problems that they can understand and provide solutions to.  When there isn’t a solution, it becomes uncomfortable to be around a chronic sufferer, and some individuals stay away, while others may redouble their efforts to find a solution.  They may end up offering proposed solutions that seem to imply that the sufferer is responsible for their continued pain, or they may make comments that come across as insensitive.  By accepting that you can’t fix the problem, you can stand supportively with your loved one in their pain, rather than seemingly standing against them and their pain.

Seek to understand by listening empathetically, and acknowledge that you can’t fully understand

Depending on the person and the relationship, it may be appropriate to ask about their condition.  In such circumstances, ask to understand, and listen in a way that helps them feel cared for.  Approach with an attitude of caring and curiosity.  Avoid saying “I totally understand” or “I know exactly what you’re going through”.  Instead try to acknowledge, “I can’t imagine how difficult that must be, but I’m so glad you shared that with me” or “That sounds really hard; I’m sorry that you have to experience that”.

There is great power in feeling connected to others.  When someone listens empathetically, the person being listened to feels supported, loved and knows that they are not alone.

He did the dishes AND took the kids for a walk.

Recognize that cancelled plans aren’t personal

Understand that limits on energy may make it unrealistic for some individuals to consistently make and keep social plans.  The friend I spoke with yesterday shared that she has begun to experience some social anxiety that peaks later in the day.  This has made it difficult for her to attend social events.  She now limits most social interactions to one-on-one visits in the mornings.  Be willing to assume that cancelled plans don’t reflect that a friend doesn’t value you, instead value the efforts that are made to set up and keep the plans that they do.

Respect boundaries

If a friend has communicated that they are limited in what they can do, respect those limits and boundaries.  If someone had a broken arm, you wouldn’t ask them to haul 50 pound bags of concrete.  Similarly, if someone has communicated to you that they have an illness or disorder that limits their social, emotional or physical capabilities, avoid asking or inviting them to do things that are outside their ability to reasonably function.  And rely on them to know what level of functioning is reasonable for them.  If they tell you there are things they cannot do, trust them.

There is a lot more that could be said about understanding or responding to loved ones with invisible illnesses.  And perhaps in the future I will write more about depression or pain disorders in this context.  Consider this post to be an overview with a lot of asterisks.  I tried to keep recommendations general, because everyone experiences illness differently, and their needs, levels of functioning, and paths forward will be specific to them.  But hopefully some of the information provided here will be helpful in inviting a little bit more understanding and a little bit more compassion.

Should Mental Illness be a Taboo Topic?

Taboo-Topics

This week is Mental Illness Awareness Week.  In an effort to promote awareness and dialogue about mental illness, I want to share a little bit about why I believe mental illness is often treated as a taboo topic, and why I believe that it shouldn’t be.

When I think of the word “taboo”, I tend to think of two things:

taboo cards First, I think of the party game, Taboo.  In this game, you are presented with a card with several words on it.  There is one word on the top, which is the word you want to help your teammates identify.  Beneath it is a list of words commonly associated with the initial word that you cannot use in eliciting a correct response from your team.  The rules of the game restrain utilizing certain words, and requires a degree of inventiveness and creativity.

Second, I think of Voldemort.  Lord Voldemort, previously Tom Marvolo Riddle, is the name of the antagonist in the popular Harry Potter series.  In the wizarding world, Voldemort is so greatly ???????????????????????????????feared that no one dares to even speak his name aloud.  Instead, he is referred to as “the Dark Lord” by his followers, and as “He-Who-Must-Not-Be-Named” by the rest of the population.

In a conversation between Harry and his mentor and headmaster, Professor Dumbledore, Harry was given this sage advice: “Always use the proper name for things. Fear of a name increases fear of the thing itself.”

One definition of “taboo” is “a prohibition imposed by social custom or as a protective measure.”  In the example of Voldemort’s influence in the wizarding world, the taboo was instigated as a protective measure. However, the wizards who accepted this socially-imposed taboo were only protected from their own discomfort and from being reminded of their fears.  And, ultimately, avoiding the topic proved to be detrimental to the safety and well-being of society.

This may well be the case with the treatment of the topic of mental illness in the United States.  The subject, and the people associated with it, are misunderstood, feared, and avoided.  And the silence that results from this fear is detrimental to the well-being of our society.

taboo mental illness

These words should NOT be automatically associated with the mentally ill.

In a study in England, over 400 14-year-olds were asked, ‘What sorts of words or phrases might you use to describe someone who experiences mental health problems?’  They ended up with a list of over 250 words, most of which were derogatory terms, described negative emotion states, or were related to violence.  If they were asked to create a taboo game card for mental illness, I would imagine that it would end up looking something like this:

And this is a problem.  This narrative of mental illness breeds confusion, fear, and negativity.  People end up pigeon-holed and caricatured in a way that does not reflect their humanness, their strength, and their need for respect, compassion and social support. This, in turn, leads to avoidance of individuals associated with mental illness and avoidance of the topic.  Views are warped, in part, because there are very few serious conversations involving informed and sensitive parties.  For many, mental illness is a taboo topic.  And it shouldn’t be.

Taboos exist in our world. Some are functional and are appropriately censured in casual discussion and in general contexts. However, there are some situations, including this one, in which the fear of a topic and the creating of a taboo around it removes individuals from understanding and responding to people and problems.  Furthermore, having taboos reinforces stigma, and stigma leads to all sorts of problems.

According to the Mayo Clinic, harmful consequences of the stigma associated with mental illness include:

  • Reluctance to seek help or treatment
  • Lack of understanding by family, friends, co-workers or others you know
  • Fewer opportunities for work, school or social activities or trouble finding housing
  • Bullying, physical violence or harassment
  • Health insurance that doesn’t adequately cover your mental illness treatment
  • The belief that you’ll never be able to succeed at certain challenges or that you can’t improve your situation

Silence inspired by fear is damaging. An inability to understand and reach out to another in their time of pain leads to unnecessary loneliness. Ignorance about depression, bipolar disorder, or other mental illnesses can lead to insensitivity, mistreatment, unmet needs and inappropriate discrimination.  It can lead to a lack of civility and towards alienation of those who are in need of compassion and support.

one_in_four

One in four adults−approximately 61.5 million Americans−experiences mental illness in a given year.

There is risk associated with silence. It is natural to avoid things that make us uncomfortable. And things that we don’t understand make us uncomfortable.  There is a vicious cycle there:  We don’t understand it so we avoid it.  Because we avoid it we continue to not understand it.  But ignoring a problem does not make it go away. And ignoring a problem that affects approximately one in four people is ridiculous.

A lack of education and continued silence on the matter prevents you from using your power and influence to help another person.  Take time to become better educated regarding mental illness and the people affected by it.  Learn how to be a support and an advocate.  An educated and purposeful voice makes a powerful difference.

5 Ways Exercise is Good for Your Mental Health

exercise
Exercising is one of the best things that you can do for your health.  It has been linked to preventing undesirable health conditions including heart disease, stroke, high blood pressure, osteoporosis, back pain and obesity.  But those aren’t the only reasons to get out there and exercise.  Exercise also significantly benefits your mental health.  Here are five benefits you could be enjoying:

1. Better Mood

Exercise helps people feel better.  It elevates mood, and can even help prevent and treat depression.  Exercise is like a natural antidepressant, releasing serotonin in the brain.  It has been found to be as effective of a treatment for depression as antidepressant medications, and its effects are longer lasting.  Research has also linked regular exercise with increased self-esteem and people who exercise are more likely to see themselves as being competent.  And, to quote Elle from the movie Legally Blonde, “Exercise gives you endorphins.  Endorphins make you happy.  Happy people don’t shoot their husbands.  They just don’t!”  So there you go.  Exercise, be happy, and don’t shoot your spouse.

2. Less Stress

Exercise helps decrease your stress!  People who exercise regularly report lower stress and are more resilient to stresses in their day.  And for those diagnosed with anxiety, exercise has been found to help them perceive fewer things as threats and otherwise decreases anxiety symptoms.  This may in part be because exercise helps strengthen the heart and lungs, contributing to regulating their heart rates and breathing.  Research has also found that exercise can be as effective of a treatment for anxiety symptoms as some medications.

3. Better Brain Functioning

When you exercise your body, you are also benefiting your brain.  Exercise has been linked to increased memory, better focus and attention, and better academic success.  In one study, students who exercised achieved better grades in math and reading and had higher IQ scores.  One study found a correlation between gym membership and higher GPAs in college.  Exercise has also been linked with neurogenesis, or the growth of new cells.  This is associated with learning, and may have implications for avoiding Alzheimer’s.

4. More Self-Control

People who exercise regularly have better self-control.  Now, you might be thinking, well, maybe it is just that people with better self-control are more likely to exercise.  Touché.  But!  Research has found that people who were assigned to exercise for several months, when compared to another group who didn’t, ended up showing better self-control in almost every aspect of their lives: less drinking and smoking, more controlled eating, less compulsive spending, fewer angry outbursts, less procrastination and better study habits.  And in a study with elementary school students, those who exercised were less impulsive and less fidgety in class.

5. Less Misbehaving

Maybe it is a stretch to consider this “mental health”, but for you parents of young kids, it will probably help your mental health if you get your kids active! Exercise has been associated with fewer behavioral problems being reported in school in both regular and special education classes.  If kids (or adults) are getting out their energy, increasing their focus, regulating their impulses and activating their brains, they are less likely to be misbehaving.

Even if it is something small like going for a walk, that has been found to make a difference.  But for best results, find something of moderate intensity that gets your heart rate up.  So, what are you waiting for?  It’s time to make like a nylon and run.