Invisible Illness

If you have a chronic illness, then you are probably aware how they are often called “invisible illnesses”. Popular hashtags in the chronic illness community are #youdontlooksick #spoonie #invisibleillness #suffering #shareourpain

Those who have chronic pain conditions have a difficult time explaining their illness to others, because, unlike a broken bone, whose healing modality makes is rather obvious to the onlooker, attempts to heal a broken bladder, or colon, or lung, or nerve, are not quite as easy to observe.

Commonly, those of us with chronic conditions are accused of “faking it”. To be fair, if you see someone who looks completely well, and then they don’t show up to work the next day, because of their “illness” I can understand why one would be suspicious. And this sucks. No-one wants to be accused of making something up, particularly when they are in terrible pain.

So, to those of you without a chronic illness, please be aware that your coworker may not appear to have anything wrong with her, but if she has a chronic illness, she has learned how to keep it hidden.  She could use some grace and some kindness.

A Power Chair and A Diplomat

Now, I have something I want to address with both those of you have a chronic illness which no-one gets, and those of you who do not have a chronic illness (whether you get it or not). I am going to try my best to be as diplomatic as possible and present both sides of the story.  A long time ago, a man in a power chair said I was good at this.

When I first worked as a school psychologist, our department used to have a plethora of run-ins with our special education director. We would get together to discuss the misunderstanding of the day in the psychology office at the special education cooperative.

He would sit in the “power chair”, sometimes called the “seat of authority”, which is the chair at the head of the table. (I was once marked down on an observation, because I allowed a parent to sit in the power chair. If I have the choice, I still try not to sit in it.)

On one such occasion, he took his place, and we all held our breath for what was sure to be another ridiculous attempt at resolving a problem. I can’t remember the details, and I’m not sure they matter all that much, but I’m fairly positive it had something to do with us having had a lunch meeting without getting his written consent prior. I do know it was referred to as “Lunchgate 2010” for quite some time.

He stated his case. My friends/fellow psychs stated ours. Some left the room in frustration. Some started to cry, but he sat there perplexed at how upset we all were over this predicament.

I knew he needed his point of view to be heard in order for us to get anywhere, and he also needed to hear our point of view in a less defensive and, honestly, basic kind of way.

So, I made some sort of statement along the lines of, “We didn’t mean to undermine your authority”…”we respect you”…”no-one considered this was something we could possibly get in trouble for”…etc. etc. 

At the end of my little spiel, he looked at me, eyes wide, a slight smile in the corner of his mouth, as he laughed this response “I never knew you were so diplomatic” and then he continued with his point of view and the problem was never seen from ours, as usual.

Even though it was said to me in quite possibly the most condescending manner possible, I continue to take this statement as a compliment. I’m still not sure if he was trying to insult me with it, if he was actually impressed, or if he was trying to say he knew what I was up to in trying to resolve the conflict and he wasn’t going to have it, but, however he meant it, I say, “thank-you”.

A Word from the Diplomat

Yes, I am quite diplomatic. I do like to see things from multiple points of view, and in so doing, I want to talk to the chronic illness community today as well as those of you who do not have a chronic illness about the whole “faking it”/invisible illness thing.

Those of you who think it’s a show: Go find a knife. Stick it in your bladder, or colon, or arm, or back or neck (you can really choose any sticking point). Does it hurt? Ok, I guess I need to say this for legal reasons, being the diplomat that I am, but please do not actually do this. Just imagine how it would feel. Ow, right?

This is exactly the pain that those with Interstitial Cystitis, Fibromyalgia, CRPS, arthritis, and all the other invisible illnesses which are present all around you, feel on a repeated basis. There may not be an actual knife sticking into their skin, but they are truly in pain. 

Ok, now a word for my chronic illness friends.  This is going to be a harder group to address, because I don’t want to be hard on you. I know you are already feeling terrible, and you don’t want to hear that your point of view may also be off. And, who am I to tell you may need to rethink things?  Am I the diplomat in charge?  Nope.  Not at all.

The only reason I am telling you is because I want you to feel better, and the land you are living in right now is not conducive to healing. I know, because I’ve been there. Here it goes.

You must stop focusing on how much the world does not understand you. It’s true. They don’t. But we are creatures made for connection. I know your disease or your pain or your illness makes you feel isolated, because others don’t understand, but the more you highlight how terrible they are, how “ableist” and how different, the more alone you are going to feel.  

I’m not saying we should pretend we are fine. I think awareness is a well needed movement. Please, talk about your illness. Wear your bracelets. Pin your ribbons. Help others to understand as best they can. But what I have noticed is an “us vs. them” mentality and it’s ugly.  Get out of the power chair and sit next to your friend to explain it to them.

When we make our pain or illness the defining feature of who we are and who others are, based on whether they are abled or disabled, well or unwell, we become our problem and all the other beautiful facets of who we are, are lost in the noise of our victimhood.

Right about now I feel I am losing at the whole diplomacy thing, but I hope you know I love you. I get that it’s hard. I’ve been there. I remember yelling at my husband because he didn’t understand. This, believe it or not, did not bring more sympathy or understanding from him. It just pulled us further apart.  It was a power chair move.

I want for all of us, ill or well, to live the best lives we possibly can, continually striving to understand one another and walking with one another through our struggles. This isn’t possible if those who are well are unable to believe their brothers and sisters who are unwell, and it’s equally as impossible if those who are unwell are so bitter and resentful of those who are well.

There are going to be the jerks who don’t get it. If they don’t support you, then they were never the type of person you should waste your time on in the first place. However, not every person without a chronic illness wishes the worst for you. They may be uneducated, but shaming them into understanding will. not. work.

I’m learning a lot about shame lately and one thing which seems abundantly clear, is that it does not inspire. If we want to shine a light on disability and chronic illness, it comes from speaking our truths, not speaking against others’ inability to see it.