Why I Think Being Open About My Chronic Pain With Others Is a Bad Idea

Living with a chronic condition of any kind is hard enough. When you have been taught your entire life to hide behind a mask pretending it isn’t real, the last thing you need to hear when you do decide to open up to someone is the cliched term “I understand.”

My entire childhood I was taught to keep a stiff upper lip and ignore the pain – don’t speak about it and it might not be real after all. Yes, in many ways that’s damaging and opens the door to giving credence to the thought that what you are experiencing really is all in your head. I am grateful though, because in the end this mindset did indeed make me stronger.

I have the strength to go out and fight for the life I want. I may currently be on sabbatical from life, but that’s been necessary to heal from a new and very dangerous foe known as osteomyelitis. Prior to that, I was “just” dealing with Ehlers-Danlos syndrome (EDS) and fibromyalgia (FMS). Neither are anything to push off, they made life very difficult most of the time, but I had learned to accept my life for what it was. I learned a long time ago that sharing my pain with others was a bad idea. When so called friends hear you have something they can’t see, they suddenly drop like flies. So for the most part I managed to keep it to myself. It’s just been a few years since I started feeling safe enough to open up about what I deal with, and I still find it very difficult to fully share my reality.

First off, both EDS and FMS are considered invisible disabilities. So when someone initially hears about it they make the expected comments of:

“Oh, but you don’t look sick!”

“Are you sure? You look normal to me!”

“My great aunt had that I think. Oh, no wait she had arthritis. Is that anything like arthritis? Are you sure you don’t just have that?”

“But you’re too young to have anything like that!”

And there are many other lines I’ve heard over the years. People are going to try and put your unknown situation into something they can understand. That’s OK, I just patiently wait and smile before either they walk off (usually never to be heard from again) or I do my best to explain exactly what I have in the simplest terms possible.

Those who stick around long enough usually next come to the conclusion that they must inform you that there simply has to be some form of cure out there and they need to help you find it – usually by suggesting the natural oils they just happen to sell as a side business. Seriously, do you even know a single person on Facebook now days that doesn’t sell natural oils? Every time I post anything online about my health I get no less than half a dozen people trying to sell me a useless cure!

Next, I get to explain that what I have can not be cured and no, natural remedies and oils can not cure everything under the sun. I’ve had this condition since the moment of conception. It is a genetic issue and not in fact curable by any oils I’ve ever heard of. I’ve had several individuals who continue to try and push these on me despite being told that there can not be a cure. They insist that I would be surprised by what their oils are capable of. Yes, I would indeed be very surprised if their oil can in fact alter my very DNA, if they prove that impossible claim I will in fact invest in all the oil they have – but as of yet, no proof has been given! I’m still waiting!

If someone makes it through all of this and has not been raptured by the fear of the unknown invisible reality I live in, then comes the always reliable, “I understand what you are going through because…” And never once has that ever comforted me in anyway.

Let me explain. I get that people want to encourage and support me. I get that they want me to feel less alone. But, by making such a statement it is almost always done in a way that downplays my experiences. By saying, “I understand, I have (insert condition here),” they have stopped listening to what I am saying and have started focusing on their own experiences. I know a lot of wonderful people with their own struggles, conditions, and disabilities, but they can not know what mine feels like. They have not lived in my shoes, nor can they. I hate when someone with chronic pain tries to compare their back pain that is not all day every day to my pain that I don’t remember not having in some part of my body in every waking moment. Someone who hurts when they do a certain activity or move a particular way can not understand what it’s like for my clothes to make my skin hurt so bad it feels like I’m on fire.

I have been in situations where I open up and it becomes very obvious that the person listening just wants to “comfort” me by trying to negate my pain by explaining all about their own. That’s the opposite of helpful.

I even went on a mission trip years ago where we were helping build a church in Jamaica. A woman in the group had cancer. I was very impressed that despite all she was dealing with that she had chosen to come and help others. Until the day that she saw me needing a break and admonished me for it because if she could be there working despite her cancer, then there was no reason I couldn’t suck up my pain. I don’t recall her exact words but they basically where along the lines of, “I understand you think your hurting, but you don’t have cancer.”

I would never tell someone with cancer they don’t know what it’s like to have my pain, but I came very close. There is this very dangerous mindset running through our society that people with a visible condition or disability are the only ones who actually have a “real” disability and anyone else can be shoved to the side. I’ve experienced this my entire life, but that day in Jamaica was the most overt it has ever been.

It is one thing to listen to someone and then share your own experiences, but by claiming to understand something you can not possibly understand you are inadvertently dismissing their experience and pain. I know most people don’t really intend to dismiss and downplay the pain of others, but ultimately that is what happens.

Next time someone opens up to you, remember just how hard it probably is for them to do so. Let them speak and instead of claiming to understand, maybe ask them more questions about their condition. Show interest in their experiences and let them feel safe to share. We can’t be strong and stay invisible forever. Sometimes we have to drop the mask and be human.

Photo by Frank Busch on Unsplash