Invisible Illnesses

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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.

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Hugging Porcupines

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From Hug Machine, by Scott Campbell

I recently started a new job working full-time as a Marriage & Family Therapist.  To celebrate my new employment, I ordered a few children’s books that I’ve had my eye on for a while.  One of them is a gem of a book titled Hug Machine.  Hug Machine is a book about a young boy who hugs anyone and anything he sees, including adults, crying infants, mailboxes, snakes and giant whales.  After showing off his hugging prowess in various settings and on myriad subjects, the boy encounters a porcupine who seems to anticipate being the exception.  “I am so spiky.  No one ever hugs me.”

The next page shows a beautiful image of this boy, decked out in oven mitts, a catcher’s mask, and other protective gear, giving a big hug to that porcupine while assuring him (or her), that all those hug-withholders “are missing out!”

This image, and the concept of hugging a porcupine, is powerful.

My therapy office is no stranger to porcupines.  Not literal ones, of course.  (Unless you count my porcupine puppet!)  Rather, many of my clients share some attributes with porcupines.  Many of them have evolved spike-like defenses that protect them, but that also make them seem unapproachable, and, in turn, make them feel unlovable.

Consider angsty teens whose body language, and perhaps even their overt spoken language communicates that they don’t want you to come near them.  Are they too spiky to hug?  Think about a significant other who, after extended periods of hurt and frustration, is characterized by defensive mechanisms such as blame, denial, snarky comments, and the silent treatment.  Is he or she too spiky to hug?  And what about the individual who experienced so much abuse and neglect and betrayal growing up and in past relationships that they don’t know how to be vulnerable or open or trusting, nor do they feel safe doing so.  Are they too spiky to be hugged?  Further, underneath all of those spikes, do they actually want and need be hugged?

I am a big believer that everyone, whether they know it or not, yearns for connection.  Everyone desires to be seen, valued, cared for and loved.  Everyone wants to be huggable.  Everyone wants to be hugged.

It is easy to allow obstacles to connection (such as defensive mechanisms) to keep us from expressing acceptance and love.  But oh how the world needs more hugging machines and fewer lonely porcupines.

The Courage to Connect

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I recently re-read Stephen Crane’s Civil War classic, The Red Badge of Courage.  As I was reading, a passage jumped out to me.  My inner therapist got excited, reached for a pen, and marked the paragraph, writing in the margin, “fear of openness and vulnerability”.

The passage describes young Henry Fleming as he anticipated his first battle.  He is full of fears and insecurities.  What if, in the heat of battle, he ends up proving himself a coward and runs away from the fight?  He wishes to share his thoughts, in hopes of finding that he isn’t alone in his fears, and to be encouraged regarding his capabilities.  But he also fears admitting to having those worries.  And so he scanned the group, hoping that someone else would be vulnerable and express their fears first.

“All attempts failed to bring forth any statement that looked in any way like a confession to these doubts which he privately acknowledged in himself.  He was afraid to make an open declaration of his concern, because he dreaded to place some unscrupulous confidant the high plane of the unconfessed from which elevation he could be derided.”

He desperately wanted connection and validation.  But he feared being rejected and derided.  His thoughts were human.  Rather than being about doubts of succumbing to fear in battle, these same insecurities could describe someone who is about to say “I love you” for the first time.  It could describe a spouse admitting to their partner about their fears concerning becoming a parent for the first time.  It could describe any disclosure of feeling afraid or inadequate.

Everyone feels inadequate at times.  And when they do, they yearn for comfort, connection, and reassurance.  However, before inviting that healing salve, they must first reveal their woundedness.  And that degree of vulnerability can be scary.  It requires removing their armor so that the wound can be treated.  But, in removing the armor, it means that they are exposed and can be easily hurt.

People need connection and intimacy.  This requires vulnerability.  And to be vulnerable requires trust and courage.

Most people have been hurt before.  Sometimes by those who were never trustworthy, and sometimes by well-meaning individuals who did not recognize the need for sensitivity or who perhaps never learned how to nurture.  If you and or your partner do not know how to respond to the other’s vulnerability, therapy with a Marriage & Family Therapist might be helpful.  It may be tempting to just keep your armor on.  But ask yourself, would you rather never hurt, or feel connected to those you love?  Connection requires courage.  It requires courage to expose your true self.  And sometimes, it first requires the courage to seek the help to know how to connect.