Invisible Diseases and Judgment. Part 1.

In the chronic pain world, there are a number of diagnoses that aren’t visible to the naked eye. A short list (not exhaustive) may include fibromyalgia, cancers, or neuropathy. Complex regional pain syndrome (CRPS), migraines, and nerve damage are also invisible to the eye.  These problems are terrible and difficult to endure. And, treatment really varies. This means that some treatments are available, some aren’t. Some are effective, some aren’t. In many cases, it’s a trial-and-error game to determine what will adequately address pain levels, and this could take months or years. It’s frustrating, sad, and awful.

Besides the issue of treatment, another topic that comes up frequently is judgment. People who have never had exposure to these diagnoses are often ignorant to the pain or what it’s like. I have had many people with chronic pain tell me about bad experiences using handicapped parking. Inevitably, someone badmouths a person with an invisible disease for taking a handicapped spot when someone else “deserved it” more. Other people have talked about the looks they receive after they park & get out of the car.

They don’t have a cane. They aren’t wearing a cast. They don’t appear to be 110 years-old. Why would they need a handicapped spot? Just because one can’t see it, that doesn’t mean it isn’t there, right? And, the car-parking example is just one of many I have heard regarding judgment. So what can we do about this?

I truly believe in empowerment. We can let others judge us and make us feel really bad, OR we can stand up and do something. Pain takes over too many lives in too many ways. Here is a list of some things that may help to empower you.

  1. Don’t let their judgment dictate what you do. Sometimes, people avoid grocery shopping just to avoid the judgment of others. By doing this, a person in pain is losing out on an opportunity to get out of the house, take a walk on flat ground, and interact with other humans. In the end, you may be hurting yourself to avoid judgment. Don’t give stupid people that power!
  2. Educate. People who aren’t in chronic pain need education. We’ve all been in pain once (I fell down the stairs last year and my back hurt so badly I couldn’t stand up straight for a week. While that was awful, it’s still not chronic). My point, is that people can generally understand what it’s like to be in pain but they don’t understand what it’s like to be in maddening pain every day and every night. I would encourage people in this situation to talk to their family & friends to help them understand. If you can’t use your own words, share a blog or an article. Bring family into doctor’s appointments to better understand the diagnosis and treatment.
  3. Speak out or ignore it. For those strangers who judge you, you have a choice. You can call them out on their rudeness. Tell them they don’t know you AND educate them on invisible diseases. Or, you can ignore them. For some people, they may never change.
  4. Use subtly. I remember in college, we did “passive programs” where we created bulletin boards as a way to educate people. Make or buy a bumper sticker. Wear a t-shirt.
  5. Expect it. I don’t think we should live our lives in fear, but if you know this is likely going to happen, mentally prepare yourself. Tell yourself that you can do it. Use self-talk and Mindfulness exercises to relax yourself and give yourself the strength to face whatever comes your way.

Hope this was helpful!

Till next time,