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:
- 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.”
- 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.
- 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:
- 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.
- 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.
- 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.
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