Invisible Pain

If you are not a regular reader, you might have missed my hints over the past few weeks that we were fast approaching my 100th blog post.  And this is that post!! Because I still consider myself to be a beginner to blogging, 100 posts is a huge milestone for me.  I have been thinking a lot about what topic to choose for this post.  I expected it to be hard to identify a topic that felt “big enough.”

As it turns out, the post topic came to me pretty easily.  With several clients in the last few weeks, I’ve explored the challenges of feeling pain that doesn’t have a clear external indicator.  We have talked about “invisible pain.”  One of our #EOLchat topics recently was the loss of support group members, and the pain of having unseen illness.  I was privileged to chat this weeks with members of the Facebook support group for fibromuscular dysplasia.  And then, while I was searching for a 2012 image for my “3 Words” post, I found this image on the artist’s main Flickr page:

Under the image are these words from the artist and the group that he designed the image for:

Artist: I modified my Decmber 2012 abstract to create this abstract for the new group , Chronic Invisible Illness.  I deliberately softened the colors to signify the hurt people have with a chronic invisible illness. They are not always cheerful, and colorful.

Group: You LOOK healthy. You may have FIBROMYALGIA, CHRONIC FATIGUE SYNDROME, FM/CFS/CFIDS/ME….or LUPUS…DIABETES, MENTAL ILLNESS…..

People do not see you as a sick person. Yet you have CHRONIC INVISIBLE ILLNESS and people MAY think you are 1. CRAZY, 2. LAZY or 3. IT IS ALL IN YOUR HEAD…….

MORE EXAMPLES OF INVISIBLE ILLNESSES
Examples of invisible conditions are arthritis, asthma, brain injury, chronic fatigue syndrome, chronic pain of most types, Cushing’s syndrome, cystic fibrosis, diabetes, endometriosis, heart disease, lupus, Lyme disease, Meniere’s disease, migraine, multiple sclerosis in the early stages, neurological and seizure disorders, osteoporosis, organ transplant, and Parkinson’s disease.

The Experience of Invisible Pain

As I read through that list, I found myself adding other items to the list: many types of cancer, fibromuscular dysplasia, postpartum depression & anxiety, complicated grief, rheumatoid arthritis, and many others that I know I’m missing.  This image and the language that accompanied it resonated so strongly with what I see and hear in session.  Everyone who comes to see me has experienced invisible pain.  And, while each person’s experience is unique, there are a few common themes that seem to characterize the existence of invisible pain:

  1. Invisible pain is often discounted.  When you don’t have crutches, or a cast, or another visible indicator of “something broken,” it is often challenging for those around you to understand the intensity of your pain.  Instead of treating your pain as real and valid, others may dismiss you as “shirking” or “exaggerating.”
  2. Invisible pain may not receive support.  Someone with a cast on may get lots of offers of assistance.  If you have progressive weakness from MS or another invisible condition, you may not be receiving that same assistance.  Employers understand missing work for an X-ray, but may not understand the fatigue that follows radiation treatment.
  3. Sometimes even the person suffering the pain has a hard time treating it as real.  I think that sometimes we hold ourselves to even higher standards than others do.  And that can mean that we push ourselves to “push through” our pain, even when we need rest and compassion.

The Impact of Invisible Pain

Mental and emotional suffering are classic types of invisible pain.  They can’t be detected visually, but they also can’t be seen with a blood test or radiology exam.  I think that one of my most important jobs as a psychologist is to help my patients name their pain, and also to treat it as valid.  When your pain is ignored or discounted, that can add more suffering:

  1. Pain that is ignored doesn’t go away.  I talked about this a bit in my post on the coping strategy, “The Box.”  Your emotions need to be expressed and processed.  If they’re not expressed, they can become toxic, seeping into multiple areas of your life.
  2. Dismissing pain can make it worse.  When you are already suffering, and someone tells you to “buck up,” or “get over it,” that has the effect of dismissing your experience.  For most people, that can add shame and hurt as new layers to the existing pain.
  3. Invisible pain can interfere with your life just as thoroughly as visible pain.  If your experience can’t be tracked or measured, that does not mean that your pain is invalid.

Being Seen

I believe that the most important way to address invisible illness is to make it visible.  I know, I know, that’s a paradox.  And I’m not proposing adding a neon sign to everyone with invisible pain.  Instead, I am advocating treating one another with the same gentleness and compassion that we would if the pain was visible.  I’m saying that, when someone describes pain that is invisible, let’s take that at face value.  What would happen if we started with the assumption that each person is the expert on his or her experience, and that you are the only one qualified to say whether or not you are suffering right now?  I think that might just change the world.

If this post resonated with you, if you are carrying a burden of invisible pain, please reach out for support.  Get that support from a therapist, a pastor, a support group, a friend–just get it.  And if you try to share your pain and you aren’t validated, please don’t give up.  Keep speaking, keep trying.  You deserve to be visible, recognized and supported.

 

Photo Credit: Abstract by FrankBonilla.tv

20 thoughts on “Invisible Pain

  1. This is so powerful and SO VALIDATING! You know how much you mean to the #BCSM gang. In our case, our “invisible scars” which one of the bloggers spoke about so eloquently fits in with your words. You are a gift to each of us and your presence in the chats is immeasurable! Thank you for being such a special part of my life.

    AnneMarie

    1. Anne Marie,

      Thank you for the lovely gift of your words. I’m grateful (maybe blushing), and so thrilled to know that you felt validated by the post. That’s precisely the outcome that I was hoping for!

      Warmly,
      Ann

    1. Thanks for that too–stay tuned. Later on tonight, I’m putting up a celebration post. In honor of the 100th post, I’m giving away a few of my favorite books.

      Ann

  2. Thanks for this great post, and thanks for expanding your definition to include chronic pain. As a caregiver for a fellow who has lived with terrible back, leg and foot pain for many years, I have seen the way so many people dismiss his difficulties. We have had doctors literally say “gee, your meds must be working, you look great today” when he is barely able to walk into the office. They seem to think if he was *really* in pain, he’d be writhing on the floor and if he is not, then q.e.d. he isn’t in pain! If he asks for more meds, they view him like a druggie trying to sell his pills. There’s a huge lack of empathy here. I wonder if it would be possible to help medical professionals learn some empathy by inducing sufficient pain that they get a sense of what it *really* feels like. Not that I want anyone to ever suffer like he does. But it seems like something drastic is needed to change some perceptions. Thanks again for all you do!

    1. Nora,

      The situation you’re describing is all too common. Because pain is not well understood and is hard to measure and document, many folks (in and out of health care) treat it as “imaginary.” I think that all of us need reminders sometimes about how intense pain can be. As a trivial example, I skinned my knee a year or so ago, and I was shocked at the intensity of the pain. Memories like that, are what I draw on to improve my empathy and to remind myself that I can’t guess or predict someone else’s pain. Instead, I can give them the respect of letting them describe their own experience, in a safe and supportive environment.

      Thanks for the reminder,
      Ann

  3. “You deserve to be visible, recognized and supported.”

    Wonderful topic Ann, and congratulations on your impressive milestone :). This topic is big, as it’s the essence of what we do as mental health professionals, and compassionate people.

    I remember consulting on some of my counseling cases, and my colleague responded, “Gawd, it’s like the walking wounded amongst us.” You make a great point about emotional pain being invisible, and how difficult the process of summoning awareness, let alone compassion, if we can’t see/label/identify our ailment.

    One of the saddest parts of being a therapist is when someone is looking back at you in obvious emotional distress and tells you how they just can’t identify why they’re so depressed. Thankfully we help provide the words and the skills. One of my happiest moments in therapy is when a client responds with, “Wow. That makes sense, I never considered that.” You can almost see the burden lifting a bit…

    Mental health IS an imperative.

    Thanks for this wonderful post :).

    1. Linda,

      I absolutely agree with you about that moment when we get the chance to interpret an experience in a way that a client hadn’t considered before is one of the highlights of therapy. Thank you so much for taking the time to share your thoughts on this!

      Warmly,
      Ann

  4. Pingback: So Much Pain
  5. Wow. Suffering from depression and postpartum psychosis…I finally understand. Invisible pain.
    I suffered the PPP for years before it was actually given a name. And depression.. No one truly understands unless they’ve suffered the same “invisible pain”!

    Powerfully truthful post. Thank you.

    1. Janet,

      Oh yes–PPP and depression are the definition of invisible pain. Although, with your blog, you are doing an incredible job of making both of those struggles more visible. Thank you so much for stopping by to share your thoughts!

      Warmly,
      Ann

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