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What You Can Do If People Pass Judgment About Your Illness

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Many people with chronic illness go through similar experiences where you may feel you need to act or look a certain way to be believed.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

There is one thing outsiders just don’t seem to get… We’re not faking being sick, we’re faking being well.

Just because we wear eye shadow one day doesn’t mean we are feeling better. Sometimes we just want to look better than a trash panda.

Just because we wear a nice shirt once in a while doesn’t mean we are cured. It means we still didn’t want to look like a trash panda.

Just because we manage to make it outdoors sometimes doesn’t mean we are Munchausen’s patients. It means we also need sunshine and vitamin D like most people on this planet, and maybe we just want to live as close to a normal life as we can and not… you guessed it… like a trash panda.

But even though this information is already out there, we (the chronically ill) still face people both in and out of the medical community that pass premature judgment or judgment based on only their perception.

What people don’t get is that every time you pass that judgment directly to the ill person, it does way more harm than good. These are warriors who’ve already had to deal with their fair share of pain, embarrassment and exhaustion explaining and proving themselves to other people. I’d like to say I’ve adapted and it doesn’t hurt anymore to hear… but I’d be lying. Every time it happens I’m equally frustrated and hurt. And talk about anxiety! It makes you feel like you need to do more or something new or print off things or start a public blog (just for example).

But then you start to wonder why certain people go through this and certain people may not. For example, for those with a more visible illness, usually if your leg is broken and you’re casted, no one thinks anything differently (well… usually). If you wear makeup, people have no doubt that your leg is still broken. If they see photos of you outside, they don’t think you snapped your leg yourself or think you’re wearing a cast for sympathy. They understand that your leg is broken.

For a person like myself, we have braces and things that we wear intermittently and this is where the human confusion comes from. For an EDS patient we may be up on our legs one minute, and using a wheelchair or stuck in bed the next minute. All it takes is one movement. It can even happen while sleeping. You roll over and bam! Your sternum subluxes and your ribs pop and you feel, in those moments, that you’re going to puncture a lung! But you figure out what to do over time, get things stable again (if able), and go about the rest of your day whether it be resting or taping yourself up so you can get to work. But people don’t see all of that. They don’t have an open door to your life. All they see is what you present to them.

I’ve long since stopped wearing any kind of makeup or jewelry to physicians appointments. (well, for the most part). I currently and finally have a really good doc that doesn’t ask why I’ve worn or haven’t worn something. He seems to understand that the symptoms change and one week maybe I’ll be braced up and one week maybe I won’t need them as much. I’m thankful for this and I wish others would follow suit. Sadly… that seems too much to ask for.

I’d like to imagine a world where these words worked miraculously and changed the hearts and minds of society but… I’d be fooling myself. There are some things that will just be until society comes to a deeper understanding of these issues. There is so little coverage of some of these disorders. Not all of us have the exposure to have a day, week or month dedicated to our conditions. Though we wish we could. For some of us that do, it’s still not widely known enough to get enough exposure to the public. It’s usually just another post they scroll by.

Now this doesn’t make them evil people. It just means they don’t understand. In truth, there isn’t a way for them to really understand. Until you’ve had to walk it, how could you possibly really grasp it? The truth is you can’t. You can empathize. You can be supportive, but you may never understand the day to day that some people have to face. Where each day that they rise, it takes almost every ounce of their energy to get up and roll out of bed. When we say we are tired, we don’t mean your typical run of the mill sleepy. We mean, we slept for 10 hours (either all the way through or intermittently with waking periods) and still wake up like we’ve only slept for five minutes.

I try my best to understand why people think the way they do, or how things may look from an outside perspective, but sometimes I don’t want to be a good person. Sometimes I want to scream at the top of my lungs and cry at these events when they happen. Sometimes I don’t want to explain to another person why I do actually need my crutches and braces. Sometimes I don’t want to feel as if I’m under constant examination by the public. Sometimes I just wish a person would say… I’ve read about this and though I never knew about it before, I now know this is a real documented condition. I won’t hold my breath.

There are some that really know what it means to be supportive. They don’t pass judgment on you. They are just there for you, and when you talk to them they aren’t harboring internal voices telling them falsehoods about you. They aren’t afraid to be around you and they don’t talk about you when you walk, hobble or roll away. They don’t find it fun and entertaining to talk in a group that you’re not in, and put you on trial without your knowledge, pass judgments without your knowledge and don’t offer you the dignity of defense. They’re like hungry, bored wolves stalking a slow moving target. They cackle like the Disney hyenas in “The Lion King.” They seem to enjoy watching you do everything. How you walk. How you exist. Waiting for a slip up so they can prove their false narrative that no one, let alone at your age, suffers in this way and they’re going to prove it to the world.

I want anyone reading this to hear me loudly. “A lion does not worry about the opinions of sheep” (George R.R. Martin). The sheep are those following the herd. They hear something that may be untrue and they latch onto it and absorb the drama like a sponge absorbing dish soap. They get a buzz. Some seratonin from waiting until you are gone and making commentary that they are never bold enough to confront you with. Truth is– they don’t actually care about the truth. They’ve set their sights on you like Robin Hood to a target.

Just remember that what they think has nothing to do with what you have to go through. They are wrong and you know that they are wrong. You know exactly why they do what they do and here’s the secret… usually it’s because they have things going on in their own lives. You are the distraction. They don’t have to focus on what’s going on if they can shift the focus to you. It makes them feel as if their lives are at least a little better in comparison to yours. What they will find is that it is a very hollow way to live (well, some of them, because some never seem to arrive at that conclusion).

I spent years not knowing what was wrong and being told there was nothing that could be done, or dealing with them calling your illness out incorrectly. Like saying hypermobility is not painful. While it isn’t for some, for others it is a pain that is present every day to the point where sometimes we wonder if pulling off our own limbs would be preferable to this kind of life.

If you are reading this and you’ve been guilty of it, think for just a second about that other person. Really think about them, and then ask yourself these questions…

Does your judgment of them make your life any better?

Do you realize that the person may be hurt by what you are saying and doing?

Do you realize that every time you present a false narrative about their situation, you are further adding to the stigma they are already facing in droves? They don’t need more party members in the peanut gallery heckling them.

Do you realize that you add to the struggles of these people with your voice and through the spreading of your message?

Whether you think so or not, your words do matter! You have an impact you make on the world whether you realize it or not.

Start thinking about how you want to leave this impact and how you want to be remembered as a person. If this fails, just try this one simple thing for us…

At the very least… mind your own business if you have nothing constructive or supportive to add.

Originally published: April 15, 2018
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