Thursday, September 17, 2009

National Invisible Chronic Illness Awareness Week: The four big lies.

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.’

So what?

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.


SharonMV said...

the big lies are true Beth! I went from having invisible illnesses to becoming invisible. my sister would call & I'd tell her I'm sick again (and only because she asked) and she say "Stop That!" One of my friends said "can't you do your dissertation from bed? I really wanted to have a friend with a doctorate". do you think it's possible that the years of study, & love of my subject meant nothing to me? That I was terribly ill facing an uncertain future and loss of my ability to make a living & one of my joys & purposes in life just didn't matter in light of this terrible inconvenience to my friend. Just 2 small incidents from the early years. Undiagnosed - so it must be nothing, fibromyalgia - well you just need more motivation & exercise & besides it's nothing. Idiopathic immune deficiency - we don't understand that & what are Natural Killer Cells anyway - it must be nothing. Insurance company won't pay for the only medication that has made a dent in the infections even though it was proved to help you in a clinical trial? That's too bad. (Not is there anything I can do being healthy & having time - write anyone, my senator, the insurance commisioner?) Got Grave's disease? well, I've heard of that - but isn't it treatable? Thyroid plummeted very low faster than your doc had ever seen? So you were walking around with massive fatigue for months because you were so used to fatigue already? Like all those times you couldn't be bothered to get up & be ready for family visits at a decent hour? We had to wait because you couldn't be bothered. When Dennis watched you cry after having no sleep in the motel, yet still managed to get up & dressed before ten, but realized you had no time at all even to put on a bit of make-up. You just looked at him & said softly "no make-up today." All the while we were put out over all this late starts. Well glad you got your medication adjusted - so it's all good now. But Wow, you actually had (not have) something real.
Just a few more examples, excerpts in brief from the first decade of friends & family who became invisible to me. Because I so rarely, if ever saw them.
A few have come round, now that I've been diagnosed with serious diseases. Some, like my oldest sister started to come around even before my dxs, because she actually visited me several times a year & could see I was sick. So I guess my illnesses are not so invisible, to those who actually look.

These stories are for you, my dear Beth.


M said...

Thank you for writing what I needed to read, hear and say.

One Sick Mother said...


Excellent post. I love the "no feet" thing.


wendryn said...

This is an extremely good post. It's interesting - the "You are doing this to me" was something I felt when I was much younger (teenagers and younger are great at self absorption) but it has gotten better as I've wrapped my mind around life a bit more.

Thanks for the reminder!

Miss Fairy Sparkle said...

excellent, excellent article. beautifully written.

k1 said...

Thank you. I needed to read this today.

Neil said...

Invisible illnesses. Hmmm. I have migraines occasionally; my Beloved once got very upset with me because we were planning to go to a play together. I got a migraine, and while I lay in my misery, she yelled at me and went off to the play very angry at my refusal to go out with her. Fortunately for both of us, she "got it" not long after that.

And just yesterday, I was trying to explain spoon theory to her.

Invisible diseases or not, you're still amazing, Beth. Thank you for the reminder to us TABs who will sometimes forget our manners.

Love and zen hugs,

ashy00 said...

very well put, i think we can sometimes accept these ways of thinking ourselves and find it hard to put our finger on why we feel uncomfortable, or at least struggle to express to others what we find problematic in their attitude... i think i will find it easier to be more assertive when i encounter these "lies" in future!

I certainly feel that i should apologise for my illness when i inconvenience the plans of others and certainly avoid doing things in case this happens - it is a hard balance to strike - as sometimes it is easier not to be present when you know the event will end up revolving around your needs rather than those of everyone else, including the person the event is being held for...

Devi said...

Thank you for writing this.

"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."

You're onto something there. Even people that don't believe in karma in the narrow sense can be very, very invested in the idea that the universe is a meritocracy.

In a way, it's understandable - it's more comforting to hold to that belief, than to face the notion that the universe can be random and cruel and bad things do happen to good people. "I have power over this situation," even if it's just the imagined power of "I can change this by praying really hard," always feels better (at first, on the surface level) than "it is what it is, and I have to deal with it."

But, as you have pointed out, this attitude can have destructive consequences. I don't think it's a coincidence that Buddhism, a doctrine that holds compassion as a central value, teaches as the first of its four noble truths that "Life is Suffering." Or in other words, no matter how hard you pray, no matter how many green vegetables you eat, no matter how much positive thinking you practice, you cannot expect perpetual health and happiness of yourself or others.

kokorogrl said...

I just happened across your blog by accident today, I'm glad I did. This is one of the best blog entries I've read in a long time.

I love the post card idea as well.

yanub said...

Beth, I'm having a busy busy day (aiiiiiiiiii!) so this is short. But I want you to know: This post rocks!

FridaWrites said...

You've done an excellent job of explaining the myths/lies we experience--and sometimes that we put upon ourselves in self-blame. My mother has a diagnosis of fibromyalgia (some level of fatigue was to be expected after her major hematologic problems) but it amazes me how much she can go and go after years of being surprised by how little she can do. Here's the thing: her activity level has not changed--only my perception of how much she can has because I went from being able to do far more than her to far less. I will be worn out after going out with her for a few hours for errands or to get school clothes for kids and am very surprised she is not and could still do more if I were still up to it. I am repeatedly seeing recently that my fatigue level is higher than hers--I knew my chronic pain absolutely is, but in the past two or three years I turned from being Supermama--other people said they had no idea how I did as much as I did--to someone who has difficulty getting dressed without help. It's a huge loss to me and it's difficult to long to do more and not in a given moment be able to. And yes, others blame me for it, think I need to try harder, think I'm giving into it, think I'm feeling sorry for myself. No no no.

Raccoon said...

I was a typical TAB before my chair. Pain? Work your way through it. Nausea? Throw up, you'll feel better...

Then the chair.

I know, it's not the preferred way to gain knowledge and empathy. For me, though, it definitely helped.

As well as, over the past few years, meeting and interacting with people with these Invisible problems.

Very well written, and a good reminder for me.

Joan K said...

Beth, very well said. As someone who is dealing with chronic illness I have experienced what you are writing about. This post is one to print and share with others.

Baba Yaga said...

As ever, eloquently put. The updated "man with no shoes" thing is so horribly true. (I never much liked the original version. Yours has truth, so I do.)

I might add to your point about watching television that often watching it (the quality of most television isn't really such that anyone'd spend half his life watching it, if he really were at liberty to do more taxing things) *is working on getting better; or at least on not getting worser.

And yet - part of the trouble is that many people with chronic, fluctuating, difficult conditions routinely do the impossible in the sight of others - and pay for it out of the sight of others. If one has any respect for another person, that respect should extend to his telling the truth about himself, even when his truth changes to something incomprehensible - but if I lie, or just smooth over, to duck pity (or to refrain from boring others), how is that different from lying to elicit pity? The contradiction, the implicit awareness that there is somewhere a lie, is there.

The best, and those who have experience of the uncharted territory, intuit what lies in silence and evasion; but can one wonder if others don't, or wrongly deduce where the lie is? It's as much a process of adjustment for those (few, but true) who stick with us as for us. & unlike us, they don't *have to adjust - doing so is an act of genuine loving-kindness.

Regarding parents with mental illnesses - hmm. I appreciate what you're saying, but the mad and the desperate can *also* be selfish arseholes - just like the rest of the population, but perhaps slightly more so, because pain very easily makes one selfish, & wobbly sanity very often makes one feel entitled to selfishness above the average. (Having my own experience of 'mental illness', I know that it made me an arsehole for many years. Heaven forfend that those who suffered my arseholery should be required to forgive it just because I happened to be markedly less than sane. Any more than I buy my mother's explanation that my father's viciousness was "just pain" - even though I recognise in myself the capacity to be exactly as nasty in similar circumstances, & the greater fortune to have avoided similar circumstances.)

Baba Yaga said...

Part 2 - apparently if one's too verbose, Blogger doesn't like it!
Often, for the children of such parents, the incidents which are "enough" to show to other people, or which come to stand as emblems for a lack of love, are those most related to mental illness. The daily grind of nastiness and spite, of uncaring and uninterest, the dull fog of low-grade terror is close to inexpressible. I can easily imagine how the logical response to having the emblematic incident explained (doubtless correctly) as symptomatic of 'illness' is "I will hate that man until I die". Because the difference between a good-enough parent who does crazy and terrifying things while mad, and a not good enough parent who does crazy and terrifying things while mad is probably encapsulated in the fact that in the latter case, the crazy and terrifying *does become emblematic of the person, or the relationship, and not just of a disruptive madness.

More widely, illness can be used as a weapon (which, after all, is a kind of tool - and many of us know we've sometimes used illness or nuttiness as a tool, if only by covering up one form with a more socially acceptable other form), depressives can be lazy, people with chronic, fluctuating, difficult conditions can also be self-indulgent - just like the rest of the population. (Of course, self-indulgence manifests itself both in doing less than health demands, as the stereotype suggests, and in doing more.)

It undoubtedly does serve the purpose of the intolerant, the impatient, the selfish to assume arseholery, laziness and self-indulgence; to imagine that missing one's brother's wedding (as I did) is on a par with taking an extra, lazy man's day off work when one has had a cold.

And that, I think, is the biggest difficulty, even above human selfishness and unthinkingness - the healthy consort with the healthy, the ill and the mad are quickly removed from their ken, and the healthy don't have sufficient experience, even at second hand, to tell them that taking an extra day or week off is only a bonus when there is an 'on' to go back to; that if time off becomes obligatory, then it's time 'on' which has to be stolen or connived for.

Elizabeth McClung said...

Thanks for the positive comments, it took me two days to work on it and a full day to write it. So many of these four I have done, and I have done to me; memories on both sides.

Sharon: Thanks for telling these stories, the one about doing the dissertation from bed was particularly cruel. People think they mean well, but some things are hard to forget, very hard.

I am really glad your sister has come around. I am going to see if I can find some more to come in person - I may be messy in my cleaning but I am not so scary.

M: Thanks for listening to what I needed to explain. The reasons why good people ended up doing hurtful things (and yet I was the one which felt bad!). I needed to know, and now I hope I call them on it.

One Sick Mother: Thanks, yeah, we have a tape set or a book for everything don't we - "Massive heart attack and arrived at the morgue. With yellow/aqua kelp, Marqe not just rose a Zombie but wrote a book and is doing a lecture tour on 'Living without a heartbeat - you can too!' - sorry, I really, really have a sick sense of humor.

Wendryn: I felt that too, these go hand in hand with the 'passing' aspect of invisable illnesses so that the more a person denies any illness at all, that they are just fine, the most frustration builds - at least in my experience - but as mental illness and the workplace go, full disclosure to all usually isn't a great plan either.

Miss Fairy Sparkle: Thanks, I worked hard so I am really glad it was of some use.

K1: Thanks for commenting, I needed the encouragement, thank you.

Neil: I had a boss who never got a cold and believed EVERY person calling in sick was a 'slacker' - it is hard to understand what a person doesn't experience - I wish we did have some of those body experience/exchange things - I know that a lot of migraine suffers would probably like to do what I do and give a full sensory exchange to their doctor and see how the treatment changes!

Ashly00: I too lie, or hide or cover up or feel bad when my invisabile illness threatens to become visable or inconvienant - the most common word is 'sorry' - why am I apologizing for something which is part of my make-up like breathing is? But I do.

I will try to be more assertive putting the lies back in the laps of those who try to force them onto me.

Kokorogrl: Thanks! I am glad you found the article useful. Email me and I will send you a postcard - honest!

DEvi: Thanks for drawing out that idea, I had forgotten that we have turned the entire cosmos into a meritocracy! I am glad you liked it, I want to examine it more, because it affects not just how people view, treat and speak to me, but also how I view and treat myself.

Yanub: Cool, very glad you read it, I know it was a bit long but I wanted people to understand, and I didn't think a little phrase would do it. Wish I could boil it down like that.

Elizabeth McClung said...

FRidawrites: I understand exactly, my mother has Fibro as well and I have gone from the strong to the weak while her vision of me is still in the past - and her vision of herself is often stuck in that she can/must do something to fix it. I am all for improving quality of life, but after a certain number of years I think a balance has to occur right?

It IS complicated, because our society is set at ONE speed, the AB speed and to have invisiable disabilities is to have a host of speeds, and society isn't ready to understand or acknowledge that 3 hours to go out for an hour IS an accomplishment. - at least not here.

Raccoon: I actually include SCI as people with invisable chronic conditions, as society doesn't really know what is all entailed in being SCI or what the level is. And certainly there is pressure to not just improve function (Hey, I am constantly trying to improve function) but that return to AB is all and if that isn't the whole focus of life then...the person isn't trying? No, too political a road to go down at night.

I'll say what you said, I did not know what I thought and said, until I fell down, the chair, the oxygen and I was on the other side of the curtain. It was a fast education, and one I am glad to have recieved. But I would like to hang about and try to get it out to more individuals (you know, for years and years).

Baba Yaga said...

Mmm, another thought (having been mostly sans words for a week, I appear to have them back with a vengeance): this "you're doing this *to me*" thing is very peculiar, and very pervasive. (We all have instances.) & yet... a friend of mine has to sit for an extended period at at least hourly intervals.

Result, I rarely see half as much as I want to in a museum - but on the other hand, a cup of coffee and a dose of people-watching in good company is a pleasant thing in its own right; and surprise! I benefit from being forced to rest before I've worn myself out, too. All it takes is an adjustment of expectations...

... Which apparently can be a very large adjustment. Paradoxically, it's probably hardest for those who have it to make least often: they forget in the in-between-times, so the new or different reality comes as a shock every time. At least, so I hypothesise.

It's harder when he & I have agreed to go to the theatre, or some such, and one or the other of us can't - I reckon that if it's something I'd mind missing, it's worth going on my own, whereas he calculates that if it's something he'd mind missing, it's something he wants to share. Once we were clear on that, and that our different choices [argh! the language of the self-help books] were just that, resentment evaporated; but only then. There's something to be said for the voicing of resentments; providing that it isn't the closing off off further communication.

& btw, the post having come, - much thanks for the latest, excellent postcard. That one will become a fixture in my kitchen. Once again, your osmosis works overtime: for my sins, I make jam from time to time, & have a chronic shortage of jars. The "return your empties" appeal is ever so apropos! & as ever, the stamps on the reverse are quite wonderful.

Neil said...

Kokorogrl: Welcome to a fairly close-knit community! Beth is the centre of one universe for us; and if you read her blog from the beginning, you'll understand why. She's an amazing woman.

Beth: Migraines: yes. Treatment: uh, treatment? Oh, yeah! There's the time I was vomiting from my toes up, and my kidney specialist prescribed Amerge; GREAT, says I in my nauseous agony, something to swallow - not!

When I could move again, I read the instructions: For use only when aura has been present and with a particular style of migraine, and not for abdominal migraines. $34 for two pills (AFTER medicare and the low income supplement), and the damn things weren't indicated for the symptoms my Beloved described to the doctor.

Just looked at the box in the cupboard. It's empty and the prescription expired 4 years ago. They never seemed to help, anyway. I guess I should go clean out the medicine cabinet now.

Love and zen hugs, O Internet niece,

cheryl g said...

Thank you for this post. This is one of those uncomfortable parts of being ill, I think. The part where we have to be more assertive about refusing to accept the lies placed on us. I feel that it is uncomfortable because of the culture/mindset of the society in which I live. The idea that the universe runs on merit is perpetrated everywhere. Along with that is the culture where the disabled were/are cared for out of charity so we should be suitably meek and grateful for what we get rather than demanding equal treatment.

When we point out that we did everything right to live a healthy life and still ended up sick that holds up the “if this happened to them it could happen to me” mirror. Since looking in that mirror is so scary many people seem to default to the “they must have done something wrong or they aren’t really that sick” idea. When we are assertive in asking for what we need rather than meekly grateful for what we get, we are troublemakers or scammers.

Sadly this cultural conditioning is very strong. I am one of those with invisible illness and I am exposed to those lies often. I am also culturally conditioned so I have to make a conscious effort to not apply those lies to others. I must remind myself that these others are not lazy, stupid or trying to vex me but they are ill. Even being one of the invisibly ill does not immediately change the mindset of that cultural conditioning and that is a very sad commentary on our society.

I pledge to continue to not let others place those lies on me and to continue my effort to rework my thought patterns so I don’t place those lies on others.

A powerful and needed post Beth. Thank you for using so much of your time and energy to write it.

Anna said...

Hm... very good post that needed to be written. I agree with it all. I have depression and hormonal imbalance. In a way it has made me more understanding, and in a way it has not. I have very bad tolerance with whining and complaining........whining meaning people going, "ohh I am so fat" when they are very fit, or "If i just had that I would do that". When they are mentally and physically and emotionally well, they are just a tiny bit afraid or lazy,
My feeling is, well come tell me about it when you really are in trouble or just try! Stop talking. Life is too short.

So my chronic conditions has made me a bit tolerant of whining about non existing problems, or the weather......

T som i Timortinel said...

I'm a bit late commenting, but excellently written.

David said...

Thank you for writing this. Just yesterday somebody told me that the symptoms of my chronic depression were just a sign of my own narcissism. And the thing is, this critique (which I think in my head I believe, often) seems to be sort of built into the illness itself. Or maybe not, I don't know. I know that in my most postmodern moments I also critique the whole Foucauldian application of medical "knowledge" onto the body and conclude from that that my problem is an excess of medical interpretation, that "really" there is nothing there other than my essential narcissism, which I can get over anytime I decide I'm ready.

I feel that this is one reason why depressed people hurt themselves...a desire to externalize pain, so that other people can see it, feel it, bandage it. So that the pain is "real" and not "just" a medical diagnosis that enables me to be narcissistic.


Julio Sepia said...

Really great post. I don't have an invisible illness* but I know people who do, and I care about the problems they face.

I hate those absurd thought patterns people hold on to. Superstitions such as "mind over matter", for example. Or the fear of knowledge. I imagine you've probably run into that barrier before.

I agree with Baba Yaga about people who are jerks with or without illnesses. Especially when there's constant violence involved. Evil people exist.

I guess the distinction is in whether the person is acting against their will. Sometimes with mental illnesses, it's hard to distinguish between the illness and the person's traits. But it probably has to do with time, maturity and how likely he/she is to change.

SharonMV's "I went from having invisible illnesses to becoming invisible" is quite memorable. I can't believe how easily people delude themselves for fear of the truth.

There are days where I deeply wish everyone would finally get everything they deserve. And people like you just don't deserve being sick. Please keep writing. The truth is a good thing.


* I'm a typical case of Asperger's but I don't think it could be called an illness, it's just a description of who I am. And anyway, it's not comparable to actual illnesses such as schizophrenia or autoimmune ones.

rachelcreative said...

I'm so glad you said all this. I needed to hear it today. Thank you.

Lailah said...

This is so great, Beth! Thank you so much for writing this. I am glad my post inspired you.

You write so eloquently about these experiences, and you grasp so perfectly even the ones that you have not experienced personally. Thanks for being our champion, our spokeswoman, our hero, and for bending that super-smart brain and author's articulateness to the cause of both bolstering those with invisible illnesses and trying to show those without them what it's like on our side of things!

I still need to read the comments section because it looks like there's a lot of juiciness there, but that will have to wait until I've had a rest. Love to you!

Stephanie said...

I've definitely enjoyed reading blog posts all over Blogworld about National Invisible Chronic Illness Awareness Week. I guess I saved the best for last - yours. (The question is, why didn't I add one in myself? I've been *so* conditioned to think that "AB is the Way to Be!" that I sometimes forget that I, too, have an invisible disease, albeit one not as disabling as others: asthma. and to top that off, I'm an introvert that really can't go out for hours and hours; for every 2-3 hours of being out with people I need an hour of alone time.)

What you wrote here resonated with me: "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.’" Just yesterday I was crying with frustration over the phone about how awful my immune system is and how I can't stay healthy, despite all I've read about "how to stay healthy". My dad controls his asthma, why can't I? But he has plenty of years on me as well.

And I did recently read a book about accepting who you are with your illness. I wish I could convince myself of that. It is so hard to make peace with.

Mark Zamen said...

This is a very fine post: accurate, thoughtful, emotionally honest, and articulately conveyed. There is no doubt about the lies and misconceptions you define so well. Human beings are indeed psychologically and physiologically complex, we have much to learn about what makes us “tick,” and a long way to go until the actualities of mental illness are properly understood. In any case, one thing is perfectly clear: A large segment of society still regards men and women suffering from various mental disorders as outcasts – or worse. The real-world ramifications of this attitude will be found within the pages of my recently released biographical novel, Broken Saint. It is based on my forty-year friendship with a bipolar man, and chronicles his internal and external struggles as he battles for stability and acceptance (of himself and by others). More information is available at

Mark Zamen, author

Anonymous said...

This is such a humous way to look at things, and that is how I handle life.....with humor and lots of laughs. That makes us for all the tears of frustration! I "shared" this on a new FB page I've started called "CRHONIC PAIN EDUCATION FOR THE PATIENT, FRIENDS AND FAMILY" If this is not okay with you, please let me know so that I can delete. Thanks, and maybe you can slip over and "like" my page. Thanks, and best wishes for the years ahead~ Painfully yours, Cathy Carlile Turner