This is National Invisible Chronic Illness Awareness Week (NICIAW?). So I have a print out post: four lies used about and against those with Invisible Chronic Illness’. You can print them out, carry them with you, to identify and console yourself, to root out of your own head these misconceptions regarding Invisible Chronic Illnesses.
I have many friends with Invisible Chronic Illnesses, and as each month passes that number grows. I want to write about this because Invisible Chronic Illnesses is NOT just Chronic Fatigue or Fibro but it can be anything from Depression and Bipolar, to Lupus, Arthritis or any of the autoimmune diseases like hyper or hypothyroidism. I have several Invisible Illnesses.
Other people have done a great job writing about the illnesses themselves, or the effect on their life like Lailah’s “television on DVD is the holy grail of the chronically fatigued” (Amen! Cats are good too!). So I will identify four of the big lies which our society, the people around us, our relatives, and even the voices in our head have accepted at true. But they aren’t true. Yet this might explain why people around you act like they act (or have run off!).
First is: You (the person with the illness) are doing this to ME (the person who is emotionally connected to the illness). That’s right, the most common lie and the one with the greatest effect on your life will be the conscious or subconscious belief of those who care about you that you are doing this DELIBERATELY against them. And yes, I know this makes no sense. But have you heard this phrase: "You let me down!" Yes? Let me give you some examples.
Fatigue: A loved one who gets upset, annoyed, angry because your fatigue comes at an inconvenient time (Illogical yes, but over time, their feelings that you are doing this to THEM grows, and the comments and actions against that occur).
An example: During a deep depression earlier in life, a loved one called and said, “It is time for the family Dinner!”
Linda responded, “Beth is very, very depressed and cannot move.”
Person, with anger in voice, “But I have made a ROAST!” (translation: Why are you doing this to ME!)
Repeat often until comments like, “Well if it is okay with BETH (Sarcasm).” Starting showing up. Because we all know that unipolar or bipolar depression is just an on/off switch used to inconvenience others (wha?).
Pain: The longer time goes on, the less sympathetic people are to the level of pain they cannot or will not experience. “Oh I’m sure you can do (whatever it is) if you really wanted to.”, “It can’t be that bad.”
Emotion: I know people who are educated, who have degrees, who have doctorates, who are friends and have no problem with my illness but consider that the mental illness of their parent as “Abandonment” (Many people: “Why did you Abandon ME!”, “Why did you burden a CHILD?”). When I tried to point out to one person that their father in a manic state throwing things out the window was not directed at them personally but symptoms of a disease they said, “I will hate that man until the day I die, because he didn’t care about ME, all he cared about was HIMSELF.” (Even though the man’s next actions were to run off into the snow nearly naked).
Well, guess what? Because YOU have a invisible chronic illness and in a different fashion the same will be thought or said by parents, by partners, by friends, by loved ones as they distance themselves from you (high, high rate of break-ups between partners where one has an invisible chronic illness): “Why are you so uncaring?” “Why is it always about you?”. “Why so selfish!” As a book on autoimmune diseases states, “the person with a disease, in order to maintain survival may appear to be self absorbed.” And people resent that. You are focusing all your energy to try and reach the toilet, when before you had extra energy to lavish on your partner. It takes an mature and special person to recognize the new reality and not resent it. Because other people will. They can know that you have a disease, but they are so busy in their headspace and life that they can’t get into yours. Only how YOU and your ‘so called’ illness is destroying and rewriting the dreams, habits, expectations they and you had for your life, and how it is changing theirs. They don’t want their life to change. You never asked for your disease, and you don’t really want it. Well they don’t want the change that comes with it either. The only difference is you cannot walk away from the disease and the effects.But if they blame you, they can.
So they blame you. Parents may huff and verbally state that well, their child’s partner is SICK (in a tone which brings that into doubt) before listing all the ways THEY have been inconvenienced. Who knew by getting ill that you were creating all these martyrs?
Is it reasonable that a parent/partner/loved one may abandon taking you to medical tests where radiation or liquid metal is injected into you to help find out what is causing your illness because it is interrupting: their tea time; their daily routine; their ability to book lunch with friends? No. But then these are defensive emotional reactions to change, and have nothing to do with empathy. IS it your fault or problem? No, not unless you happen to be the global mastermind behind who gets Chronic Fatigue and who does not. Stuff that is beyond our control happens, and that will affect others. How they deal with that will alter how they view US. That is their issue, not yours. Except of course, 60% of your friends, relatives and even your parents aren’t talking to you anymore. And that sucks.
Your life changes….because of that lie. That you needed to be institutionalized while your medication was balanced becomes that it happened in order to embarrass your mother; or that you have fatigue in order to deliberately miss thanksgiving and that you lost your job due to an autoimmune disease because you wanted to be called the ‘failure’ of the family.
It is a lie. Those who run away use it. The truth other should state is, “I don’t want my life to change, and if you have to suffer alone, so be it. As long my life remains the same.”
Second big lie is: “You should get better/You CAN get better.” Everyone buys into this one, even us. Because there is always the person who DID get better, then wrote a book about it. In fact, the greatest reason that Chronic Fatigue Symdrome/M.E. in North America got moved a bit from being considered a disease of bored slackers and unmotivated educated women is because the very doctors who had looked down on the ‘whiners’ who came in claiming they had CFS:Until those doctors GOT CFS. Suddenly, treated in the exact same manner by colleagues (that if they really wanted to they would get better immediately; that they probably have several emotional issues, and it was in their head), article after article came out to show that they were NOT faking anything. Articles about how it was a REAL condition. And a few doctors who had it held medical conferences. Where are Chronic Fatigue or Fibro in the popular TV shows? Or many or ANY of the invisible chronic illnesses? The ONLY medical show I know which discussed the pain and limitations about Fibromyalgia was Strong Medicine, a female based medical show like ER, but on the Women’s Network. Or as Wikipedia summarizes: “Many members of the medical community consider fibromyalgia a ‘non-disease’ because of a lack of abnormalities on physical examination,… Many patients diagnosed with fibromyalgia also have psychiatric disorders.” Nice.
I have had on average 10-20% of the CARE workers sent to me, those paid and trained to assist my care tell me in one way or another that I could get better if I only started: eating green vegetables (left a book), eating beets (left a pamphlet), with divine intervention (prayed), with a change into positive thinking (offered to leave a book), and so many other remedies offered….ALL done without having the slightest idea of what my condition is. Nope, they never even asked, but knew that eating only green and purple foods could cure me. There IS no magic bullet that we just need to find. No single cure all act.
The most common assumption pre-diagnosis from EMTs, from semi-medically educated people I encountered was that either I had a) Stress, b) Fibromyalgia or c) Both.
Go to ‘Heath’ section of any newspaper or any online ‘news’ and you will NOT find the 1 in 6 of us with disabilities/impairments. What you will find is article after article on how to get better, to be better, to make sure you stay better. And columns which offer to do the same.
This lie is so pervasive that it twists our hope and energy and everyone I know who aquired an invisible illness has to fight the voice inside in the head that says, “You are better than you show.”, “You could get better if you tried again”, “You should get better.” I fight it. It takes years to be at peace with, ‘this is where I am, and to survive, I need to find the healthy balance with my disease.’ Why? Because the idea that we did EVERYTHING right and yet got a life-changing disease for no reason at all goes against everything that our society is based on. There must be SOMETHING we can do. So there goes all our energy. Because people who only feel they ‘should be getting better’ have no time for joy, they deserve no luxuries, because they SHOULD be getting better. And those who view them feel the same. “Why are they watching TV, why are they taking it easy? They should work on getting better.” Sometimes there is no better, only here.
When we don’t punish ourselves, the society does it for us. The adage today is no longer, “I felt sorry for myself because I had no shoes, until I met a person with no feet.”
It is, “I felt sorry for myself because I had no shoes, so I invested in self help tapes which taught me to make shoes and then I tried to loan them to the person who had no feet but they were to into ‘their spiral of negativity’ to accept that the ‘idea of the feet’ is one in the MIND which can be overcome!” – yeah, we’re kinda like assholes culturally.
“Have you tried acupuncture?” (if you answer no, the implication is…you don’t WANT to get better!), “Have you tried alternative medicine?”, “Have you tried aromatherapy?”, “My cousin’s sister-in law’s babysitter had something like you and she ate liver and it cured her.” (What did she have after you investigate it all? Morning sickness). Fine, want me to act, I can act! (act out!)
Until ‘Spoon Theory’ came along we didn’t even have a way to demonstrate the difference between us and other people, to explain the choices we make in a normal day. And yet people are STILL haunted and driven by the lie that You, yes you, the person with Lupus, with a dying thyroid, with Fibromyalgia, with peripheral neuropathy and fatigue of unknown cause….you must have done SOMETHING to cause this to happen to you. And thus you must need to do something to reverse it.
The last big lie is a tie between two: “I am doing you a favor” and “You aren’t an equal human (because true humans are healthy ones!).” – you will hear the first one, and you will be affected by the attitudes of those in health care by the last one (and the first one).
Say that you belong to a church, you taught the children, you were in the choir, you were on the annual Xmas committee. But now you are, due to your illness, unable to attend. You get no visits, you get no people bringing the Xmas committee meeting to you, but a note in the post saying, “We’re praying for you!” – and from their side, they are doing you a favor. Except a favor is treating others BETTER than you would want to be treated in the same position, not simply chipping of a tiny slice of your valuable time. Acknowledging someone is alive is not a favor.
You have a friend you meet monthly to talk with. Sometimes they cancel due to a cold, or an emergency commitment. ‘Things happen’ and you understand. You sometimes have to cancel due to fatigue or other illness related conditions. Yet over time, that friend drifts off because you ‘flaked out too often.’ Huh? The pace of life your illness sets for you is the ‘wrong one’ it seems. The ones that stay, they are the real friends.
And while you may end up being someone who is unable to work, or who can only work in the most limited way. And you need workplace accommodation, or have limited to no income, and a life where all money is spent on medicine. Because of that, soon you can’t talk about what movies you saw in the theatre, what coffee shop is the best this month, who is dating who, the best resturant, because you are now moving at a different speed, with different disposable income, but more important, different disposable TIME than others. Just getting outside can be a luxury.Yet you are still an EQUAL. But you aren’t treated that way. Often you are treated that talking to you at all is doing you a ‘favor’ (or worse will end up on some resume as ‘assisted social functioning of the disabled’). And in health care, getting equipment to assist you from insurance or government is treated as if you are the child and they are the adult. But actually you are the customer and they are the employee. I mean, they get paid to help YOU right? So why do they treat you like talking to you, or helping you is them doing YOU a favor?
In order for me to get a discounted pass to the YMCA-YWCA I had to sign a form that I would use the pass ‘appropriately’ and with frequency (though when asked no one knew what ‘appropriately' was). Odd, I thought the Y was based on equality; do they count how often the people who pay full amount go? Then why count the times those who pay 50% go?
Often I am to sign agreements that if I show up late to a meeting with someone to coordinate aid I will lose my appointment after being told while they look down the nose at me that, “There are OTHER people involved, you know.” Yet, of the six to eight agencies and all people from those agencies, I have NEVER had them show up to a meeting I set on time. Not in over 2 years. And when I take that agreement form regarding MY time and MY commitment though ILL to be on time and write, “And if the representative is more than ten minutes late they shall forfeit the wages of that day to a charity of choice” I am told to stop being ‘ridiculous.’ Is it? Seems to be ‘One rule for us, one rule for them.’ And the lie they tell themselves is that in doing this, we are all equal.
Equal. Okay, here is a personal secret, I never needed to pay for any university unless I chose. Why?: in testing from elementary up my scores were not within the top 1%. Nope not me. My scores where with in the top 1% OF the 1% which took high end testing. Which meant that I was untestable by Mensa standards, and most standards, because they were incapable of learning at the speeds or seeing the world in the way I do. Because they weren’t ‘smart enough.’
Should I spend my day (as some actually do) looking down on every person because I am rated or tested ‘smarter’ than they are and have to amend my speech accordingly? No. Why? Because they know how to fix my car and I don’t (well I know the THEORY, they just are better at the practice). Because they are holding a dental drill in their hand inside my mouth. Because the choices, the decisions, the values, and the potential of each humans is what defines them, not the comparison in just one venue. We are all humans, equally.
I receive assistance for my invisible illness because I am human. That is the only reason required. And that is the only reason that our society requires, despite the caveats so many want to add. I am equal and all those with invisible illness’ are equal as HUMAN beings. I can’t make jewelry like some, I can’t mediate like others, and I can’t run anymore but those who can are not ‘doing me a favor’ to talk to me, nor am I doing them one.
The most harmful lies that those around us believe are that we, by being ill have done something to THEM, inconvenienced THEM. Or that we should and must cure ourselves. Or that to even be or talk with us is doing us a favor and that we, by being ill are no longer equal humans in all respect. We can’t change every person who flees into the refuge of these lies, or in the refuge of blaming you for your own illness, but maybe we can tell the voices in our own head to shut up. And maybe even show one or two people close to us that no, being fatigued is not a plan to destroy the picnic, it is just being fatigued.
59 minutes ago