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.

King Triton, Pendulums & Authoritative Parenting

I have loved Disney’s The Little Mermaid for as long as I can remember.  I loved the music, the characters, and the story.  Part of Your World is still my go-to Disney karaoke song.  I became especially  sentimentally attached to The Little Mermaid at age nine, during my tomboy phase, after my great-aunt Debra gave me a Little Mermaid diary.  She said that it reminded her of me because I had red hair, loved to sing, and wanted to be something I wasn’t (again, tomboy phase).   I love the childhood nostalgia I experience when I watch The Little Mermaid, now as an adult.  But, as an adult, I’ve noticed a few things about the film that I hadn’t during my childhood.  And I have to admit that I am disappointed with some of the messages, the parenting, and the horrible logic occasionally demonstrated by the characters.

The following is an example of poor parenting and poor logic taken from a scene at the end of the film, right before King Triton restores Ariel to a human form to be reunited with Prince Eric.  I have recorded what is actually said in the scene, and in italics I have included how I interpret some of those lines when they are spoken.

King Triton: She really does love him, doesn’t she, Sebastian?

She really is infatuated with him, isn’t she, Sebastian?

Sebastian: Well, it’s like I always say, your majesty; children got to be free to lead their own lives.

Well, it’s like I am about to say for the first time, your majesty; teenagers with little life experience and who prove their lack of good judgment by selling their voice and soul to a witch in order to physically changes their bodies for a chance at attracting a man she has never met, should be free to make their own choices.  Sure, if you hadn’t gotten involved she’d be a sea slug in the witch’s lair or the entire ocean could belong to someone evil.  But, hey, let her make her own choices.

King Triton: You, always say that?

Sebastian: <looks charming>

King Triton: Well then, I guess there’s just one problem left.

Well, if I am to use the same caliber of logic as everyone else, then I ought to assume that infatuation is love, and consent to what my 16 year-old daughter wants rather than consider what is in her best interest.  But there is still one drawback that I’m willing to admit to.

Sebastian: And what’s that, your majesty?

King Triton: How much I’m going to miss her.

I am going miss my teenaged daughter after I change her into another species, send her off to marry a stranger I know virtually nothing about (and with whom she has never had a spoken conversation), especially since I will probably never get to see her again since we will live in different ecosystems.

Is it just me, or is King Triton not thinking this through very well?

It is interesting to consider how at the beginning of the film, King Triton’s disciplinary style was rather harsh.  Okay, extremely harsh.  He yelled at her and destroyed all of her valuables.  His parenting style in that exchange could be characterized as authoritarian (high control, low warmth).

However, by the end of the movie, as illustrated in the scene transcribed above, his parenting style has changed to be permissive (low control, high warmth), authoritarianism’s opposite.    Neither style is particularly healthy.  According to research, children benefit most from parents who are authoritative.  In this style, a parent has a high level of control, alongside a high level of warmth.

It is reasonable that King Triton, after recognizing that his authoritarian approach elicited rebellion and acting out, would want to change his strategy.  And logically, he would want to do the opposite of what had failed.  Unfortunately, he still wasn’t acting in the better interest of his child.

Think about it.  He just changed his sixteen-year-old daughter’s physical appearance and gave her his blessing to leave home and marry someone that she met three days ago and has never even had a real conversation with.  This is not healthy parenting behavior.

Similarly, many parents make the error of acting opposite of something that they know didn’t work–perhaps it didn’t work with another child, or perhaps it was hurtful to them when their parents used a particular parenting strategy or style with them.  So they swing from one extreme end of the pendulum to the other.  They wisely avoid doing what they understand doesn’t work, but end up inflicting a different flavor of hurtfulness by going too far in the opposite direction.  There is a need for wisdom and balance, rather than reactive, oppositional, or guilt-driven responses.

I realize that it would have made for a lame ending to the movie, but it would have been better parenting if King Triton and Ariel had had a heart-to-heart conversation and if there had been consequences associated with her reckless behavior.  Those consequences should not have been destructive to her property or their relationship as was the case in his earlier reaction.  But to have no boundaries leads to no safety.

Take-away lessons:

  1. Don’t adopt a parenting strategy of  “always do the exact opposite of what hasn’t worked”
  2. Strive to be an authoritative parent.
  3. If your sixteen-year-old wants to marry an older man she just met, don’t finance and host a wedding the next day and then send them off to live on the moon.  It’s not good parenting, no matter what Disney movies might say.  Just because something makes a good story, doesn’t mean it leads to a happy ending.

Problem or Solution? Lessons from Fainting

During the second semester of studying Marriage & Family Therapy in my Master’s program I started to experience an interesting pattern.  I would randomly faint about once a month, each time early in the morning on the first Monday of the month.  The first time this happened I assumed that it was because I had gotten up several hours earlier than usual and hadn’t eaten breakfast yet.

However, when it happened the following month I was in another state, it was a little bit later in the morning, I was engaged in a different activity, and I had eaten breakfast.  But I assumed that my cold cereal breakfast simply hadn’t been substantial enough or that my body was adjusting to a much colder climate.

But the next month, when it happened again, I knew that my body had acclimated to winter and I had taken to eating especially hearty breakfast meals in response to the previous incidents.  That told me that something wasn’t right within me.  And so I finally decided to go and see a doctor.  I went to the university’s student health clinic and was able to see a doctor that day.

When I met with the doctor she asked some questions, checked my weight, and ran a few tests but ultimately said that there wasn’t anything discernible causing the issue.  She said I fit the profile of a “benign fainter”, saying that some people with a slight build can be more prone to fainting.  I was disappointed to not have a more concrete answer.  I wanted a problem that had a solution so that I could fix it!

I voiced my disappointment commenting. “Well shucks!  I was hoping to find out what was causing this problem.”  And the doctor’s response was, to me, very profound and impactful.  She responded, “Your fainting isn’t the problem.  Fainting is your body’s solution!  The problem lies in not enough blood getting to your brain and your body is solving the problem by getting you horizontal so that your bloodflow to the brain is least obstructed.”

When I heard her say that, a lightbulb went on for me.  What I had been learning in graduate school about systems theory took on a whole new meaning.  The “presenting problems” that often bring clients to seek therapy generally aren’t the core problems.  Usually they are symptoms.  And they have a purpose!  They are their bodies’ or their families’ ways of trying to manage underlying and unresolved problems.  I thought about how families often come in with one child designated as the problem, or what family therapists refer to as “the identified patient”.  But often, the child isn’t the really the problem.  Don’t get me wrong; their behaviors are problematic.  But often, that child is a “symptom bearer”.  The behaviors are evidence that something in their world, be it in their family world, or social environment, isn’t healthy.  Just as my fainting was ultimately a solution rather than a problem, often times a child’s acting out isn’t a root problem as much as it is their attempts to manage the distress in their lives and/or family.

That experience profoundly influenced the way I conceptualize problems, change and healing as a therapist when working with families, couples and individuals.  It has been over seven years since I met with that doctor, and I have not fainted since that day.  I like to think that a higher power orchestrated my string of faintings so that I would learn an important lesson that would help me to better understand, assess and provide healing to those who cross my path.