So what are some of the things I have heard from people. The general people I have encountered in life about chronic illness
“You are lazy.”
“You are just depressed.”
“At least it is not cancer or fatal”
“You’re in pain All the time?”
“I don’t understand what Fibromyalgia Is? Like what Causes it?”
“I heard people with Fibromyalgia are just stressed.”
“Maybe you should stop taking all those pills. Those are toxic.”
“You must not want to get better if you don’t want to try….”
“Get out of the house more, exercise more…”
“You Still get those migraines?”
“It is like you’re always getting diagnosed with something. That can’t be right.”
“You have Another doctors appointment?”
“You should try this diet, I heard someone got better on it”
“You should just push through the pain.”
“You’re letting yourself down, your customers down and your co-workers down.”
“It is like you are always getting sick.”
“Maybe if you slept more.”
“You never want to go out.”
And I have heard some crazy suggestions. Most of them well-meaning. Some not so much… some sort of a blaming the person sort of deal… like if you only had a perfect lifestyle you would be Cured deal. In the end I get that people need to fill space. They don’t know what to say so they say something. So I listen politely, nod, sometimes comment and that is that. Sometimes it is a little hurtful, or at least when I was younger it was, but these days I have heard it all and it rolls right off me. Except when it is cruel and makes me feel guilty for being ill… that gets to me because I have so much of my own guilt that sometimes I agree… and then later I feel angry they made me feel like that.
In the end though some people doubt our pain. Because of this stoic facade, I mentioned that we have developed. It develops naturally. Our facades. We create one with doctors in face of their stigma. We create one with family to protect them from seeing our pain. We create one in the workplace in order for customers to not see our pain and to pretend to function. It is so well-formed chronic pain is the invisible disease that conceals itself. The facade is something that is both to protect other people and for us to be functional… and yet… and yet it masks the pain, a chronic pain people have trouble grasping, to begin with. If you hide all the features people use to ‘see’ someones’ suffering and physical or emotional pain it literally makes it harder to comprehend and grasp. However, not like we show it. Certainly not all the time. Then we are exaggerating. Complaining. Trying to get attention. And it is unrealistic to express pain that is constant… certainly the baseline pain we then define as our normal and not even worthy of comment.
With chronic pain… your pain scale becomes skewed… it just happens. Pain has many flavors that most people never have to ‘appreciate’. Fibromyalgia has a baseline pain that is always there and then areas that hurt more and then flare-ups that hurt like a bitch… hard to give a ‘number’ to it. But to the baseline pain… we are likely inclined to say 5 because it is in the middle, and it isn’t low and it isn’t high, but it is a constant thing… but so constant we consider it to be normal. Someone who never has pain would give it a higher number… of which I am not even sure what that would be, to be honest. I suppose it depends on both the pain tolerance of that person and the baseline of the person with FM. But you begin to see the problem. With migraines it is said every migraine, every one, is between a 7-9 on the pain scale… but someone with episodic migraines is less inclined to be walking around, working, having a conversation… that someone with chronic migraines has to do at the 7 level… and 7, by the way, is pretty damn high. 7 is not a pleasant level for anyone to be at. Obviously, we are compromised to some extent at a 7, but we are forced to compensate and function on a basic level anyway… it isn’t fun or even realistic, but it is a reality.
Which is what makes chronic pain a language unto itself. We get each other. We have this sort of repressed stoic, calmness under which hides a great deal of torment. We have so many descriptors for our pain. Shades on the pain scale. Many pain scales. We write poetry about our illness. We do fantastic works of art to express our illness and pain. We try to use language to the fullest extent and go beyond language to communicate all the nuances of this suffering. That Facade that we master so well to mask our pain so that we can function with some level in society without being obvious we are in a great deal of pain. It is a pretty necessary thing. For pretty obvious reasons…. But it makes it a pretty horrific self-concealing invisible illness to have. But… you will often find we do not complain much. We do not express our pain much in reality, and what we do express, is not nearly what is actually there… what is actually there is constant, what is actually there can be terrifyingly intense and that is not something that can be expressed often. We can be pale, we can be grim, we can be green around the gills, we might tremble, or shake… but words will fail us then, will be hidden, concealed behind this false facade.
Language Fails Us
That… is very normal. It just is a normal occurrence with chronic pain. I’ve been told by doctors I am very stoic. I wonder what they expect? Screaming? Crying? Don’t they realize that makes the pain worse? I don’t know. But whatever the case may be… they are trained like everyone else to know pain behaviors and are confounded when they don’t see them. They more than most ought to know better. As I had mentioned… they are partly the ones that teach us not to make a fuss about pain, aren’t they? And it is a problem that pain cannot be seen. It makes people doubt it. So we have a real problem with that overall. That because we learn to mask our pain… for others… they doubt our pain. But the stigma doctors create seems to bring this element of… your very illness is an embarrassment to be hidden. The pain is to be endured, suffering to be masked. That your very illness is something that even your doctors are not sure about and will not treat. If it is brought up you cannot help feel a little embarrassed about it. Only made worse if people sympathize.
So it is frustrating that we develop such a skill to mask our suffering and this very skill inhibits other peoples’ ability to see our suffering. So when we state how we feel… and when we do we feel like we must be complaining. Surely we must be saying things ‘too often’. We must talk about this way too much… and it is hard not to when everything you do is to help you feel better, get better, create a new habit to get better. Or it is a significantly bad day. So you say ‘Today is a significantly bad day’… ‘wow those migraine auras sparkle today’… ‘this is a bad word day’… ‘this is a bad pain day’… whatever you might say, however, you might phrase, whoever you might say it to, whatever message you might be trying to get across… it is never quite understood. That when you mention something it is Significant. That is is more than usual and usual is something apparently no one quite grasps. So if they cannot grasp what you must deal with always, how can they grasp More Than. Such that even when you are trying to convey This is Seriously Bad or Desperately Bad… language fails us. I wonder sometimes if it fails us because we are in chronic pain and people do not understand when we mean More Than or if our facade is that complete that they cannot see when the suffering is that Large that it is about to consume us. It seems they only understand suffering when our facade fails us because people assume pain must come with emotional suffering… not saying they are not linked very closely, only that we hide a great deal of that and they are not Necessarily linked. People do not comprehend laughter and smiling combined with physical pain. It confuses them.
Nevertheless, I find it rather easy to explain my actual disease to people these days. ‘It feels like having the flu all the time’. ‘It feels like being hit by a truck’. Those I used to use. Now I get downright educational. I have gotten pretty creative to describe migraine auras, the vertigo but the migraines… but again with the migraines themselves I use facts and education. That is really the tip of the iceberg stuff. I’m just saying that is what it feels like physically. Not what if feels like to have this all the time, but that is perhaps more than is needed in most cases.
I understood… some pain is considered ‘real’ and some isn’t. If people can wrap their head around it… it is real to them. But… when pain is chronic… it is a problem. When it comes to people and chronic illness stigma … I find it is when my illness is a problem to them. Which means, like my second post, in the medical field where my illness was a problem because it was either unable to be cured or they did not believe in it. A problem.
It is also a problem in the workplace. Not all workplaces by any means. I have worked for many places and I have had FM for all of them and it was never a problem for my employer. For me, yes, far too painful but I worked through it and hard and they certainly had no issue with me, often wanting to keep me on through university, even though I was not capable of that. Also had a couple employers after university who were very good about the FM and migraines. Great managers. One who was completely unwilling to compromise and led me to a different job. And another who had a great deal of stigma about chronic migraines, so I rather mentioned very little about FM during that job since I didn’t want to add to the stigma. Stigma comes on slowly though when you become a Problem to the employer. When you miss too much work. When you have leave of absences. When they don’t know how to ‘fix’ it. It comes out in a variety of poorly phrased comments… the same sort you might get from others about your illness. Why can’t you get better? Why don’t you try this? Then in veiled threats. Not so veiled threats. Demotions. Guilt trips. Many ways. I think in many ways many of us put up with this sort of thing because often we don’t see this as a problem at first. Maybe just helpful advice? Maybe they are sympathizing with us? Maybe they are trying to motivate us? And sometimes we feel so guilty that we cannot just power through the pain that we feel guilty we are ill, so it is our fault… so we should ‘try harder’, right? I cannot count how many of those ‘conversations’ made me feel so bad about myself I was in tears, felt so horrible, so guilty, so trapped by the fact I could not make myself better, could not force myself to just Be better, but had to somehow get through the pain to function better. I admit those words had the power to hurt me, and over time, they affected me mentally, emotionally… in profound ways, until my self-esteem diminished, until my self-worth diminished. I regret putting up with workplace stigma… but I didn’t realize I had the right not to… and I regret more letting those words affect me.
Our illness may be seen as a problem in many scenarios and we may come across stigma in many places. These people have to be handled differently than other people. They are not out for our best interests… but there own. To resolve the problem they see. They need to be educated on the facts. The problem may, in fact, be one that can be resolved by understanding an illness may need certain accommodations or may need certain adjustments in certain situations but that in life we do these sorts of things all the time and we want to function, so are more than willing to find ways to do so better. Nevertheless, people like this need to be informed with blunt fact. At times in a work situation, you have to go around them to an HR department if they refuse to comprehend reality.
Revealing and concealing
With a chronic illness, we are trying to function all the time. What people grasp or understand is the tip of the iceberg and the rest is hidden from sight under our facade… as we try to function. However, I can comprehend why people do not understand the battle. It is a very complex experience that at times we struggle to cope with and understand ourselves. Explaining the depth of it is pretty much impossible… we can only explain fragments of it. And over time people who know us well begin to understand those fragments as a whole. I cannot explain to someone I care about how deeply difficult the pain is to bear because while that is very true at times, I don’t want it to be true and I don’t want them to worry… so I only present to them what I want them to see and at times what I want to believe. Clearly people I care about get to see more depth than anyone else so I cannot hide as well as I can with the average person. It is remarkably easy to mask your pain in front of people who know you casually… and I am sometimes amazed at that, but while when I was younger I wondered ‘why can’t people understand my pain? Why can’t they see it?’ I now know it really is easy to conceal and we do it so naturally and people do not take that keen of an interest to see the markers of it.
While it used to make me feel very isolated, these days there are much more online support groups so I am very aware I am not alone and the fact my disability is invisible is not such a burden. Do I need every person I encounter to grasp every aspect of my disability? No. Not in the least. Only a select few do I need to understand my limitations and others to understand more depth.
In the end, it is up to me how much I reveal and how much I conceal. We encounter people all the time in our lives. Some mean far more to us than others. Some I never revealed a thing about my health to them. Some I revealed fragments because they asked… because they were curious and I used those opportunities to educate them on what my disease is about. Others I wanted them to understand the limitations and how I got around them. Others I wanted them to comprehend the struggle. Just like we wear a different part of our personality with our friends, than we do at work and with family… so it is I wear my facade of wellbeing all the time to conceal my illness for different reasons but reveal aspects of it for different people in different ways.