“Just Because You Can’t See My Pain Doesn’t Mean It’s Not Real”

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If you are just tuning in, I’m in the middle of a series called Explain Your Pain. You can check out the introductory post here. This is the second out of ten conversations we need to have with family and friends about our chronic pain. To check out other topics, click here

Today’s topic is the subject of invisible disability, a topic that has been addressed time and time again. It is a classic for a reason. For many of us, if we could choose just one thing for people to understand about our pain, we would go back to this age-old issue of invisible illness, this fairly simple concept that the vast majority of the world can’t seem to grasp.

Not all physical disabilities can be seen.

Just because you cannot see the pain doesn’t mean it’s not real.

Just because I don’t walk with a limp, use a wheelchair, or carry a cane, doesn’t mean I am healthy.

And no, I am not “too young to be in pain.”

Somehow, in some way, we must figure out how to explain to our family and friends that they can’t assess how we are doing by simply looking at us.

Addressing the Broader Issue 

There is a broader issue at work here.

People have a pre-determined picture of disability in their heads, and it usually entails either young individuals who have been in tragic accidents or elderly individuals who are experiencing the effects of aging. It usually entails individuals who have something visibly wrong with their bodies, or individuals who must use mobility devices to get around.

And this pre-determined picture of disability does not leave any room for individuals who look healthy and vibrant and athletic, but are secretly dealing with severe health problems.

This issue of invisibility disabilities is indicative of a larger issue. In real life, we tend to come to snap judgments about people within the first five minutes of meeting them. We make assumptions about people based on how they look, dress, talk, and carry themselves, assumptions that really cannot be made based on visual pictures of people.

We assume that a pretty young woman is a teacher, not an engineer and a big burly man is a carpenter, certainly not a nurse. The attractive and well-dressed teenager could never have a difficult life and the guy with the tattoos much be a biker dude and probably does drugs.

When it comes to the problem of invisible disabilities, the bigger, overarching problem is the issue of stereotypes. The belief that  people fit a certain mold because of how they look, dress, and act. The myth that we can place someone in a box based on gender, race, cultural background, age, and general appearance.

In our specific situation of invisible disability, we are fighting the stereotype that disability discriminates on the basis of age. We are fighting the stereotype that to have a disability you must be missing a limb, use a wheelchair, or look incredibly sick.

All our lives, we are fed the stereotype that individuals who are disabled are old, look physically different, or use a mobility device. When we seek to educate people on the issue of invisible disabilities, we have to remember that we are speaking out against beliefs that have been held for decades. It won’t be an easy change of perspective, but it is also not an impossible change of perspective. 

The Answer is to Listen instead of Look

One of the first things I learned as a counselor is that the people who sit in front of me in my office will always surprise me. They will always have something in their lives that I was not expecting, something that doesn’t fit the expected mold.

All of us falsely believe, to one degree or another, that we can understand people by looking at them, but we can only understand people by listening to them.

Fighting stereotypes starts in our own lives as we stop assuming things about people around us, and instead start asking questions. We start asking about other peoples’ lives, knowing that we will be surprised and find out things we never would have expected. We are careful to break the stereotypes that we hold in our minds, asking lots of questions and seeing people for who they really are based on the stories they tell us about themselves.

And then we respond by speaking the truth about our own stories and lives of pain.

We say the things that feel so weird and awkward to say until they don’t feel weird or awkward anymore.

“I look fine now, but I will go home and collapse. I can only fake it for so long.”

“I know I look healthy, but it is actually a myth that you have to look sick to be sick. I sometimes put on makeup and do my hair and wear a favorite outfit so I can feel better about myself when I am feeling so horrible.”

“I act healthy in public because I don’t have any other option.”

“People think you can tell if someone is physically disabled by looking at them, but this is actually not true. Some types of pain are not helped by canes or wheelchairs, and there are also disabilities other than pain or paralysis or loss of limb such as fatigue, dizziness, or cognitive impairment. It’s ok, I didn’t know this before having health problems myself, but it’s a good thing to know because people often need more help and accommodations than meets the eye.”

How do you explain your invisible disability?

3 responses

  1. I have said the “when I get home I will collapse…” Sometimes I don’t have a good pain day(which basically is every day I have pain but it depends on that day how much I can tolerate and sometimes there is only one good hour 🙂

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