First I must admit that EVEN I am not old enough to remember Claude Raines performance in The Invisible Man... I guess I could be a bit more "trendy and current" by referring to the invisibility cloak in the Harry Potter books... either way you get my drift!
I am writing this blog for a brand new blog carnival that is specifically focused on Understanding Invisible Illness (UII to those on the inside!). This first call for blog submissions has asked for successful procedures or treatments that make life better. Unfortunately I haven't got a story that is exactly of that ilk but I certainly can wax lyrical, at length, about the influences in my life that have made my (mostly) invisible illness easier to bear.
First though I want to talk a little about what this invisible illness means to me. Way back when I first started Gonna Eat Worms I wrote a blog about invisible illness and in it I drew a parallel between having an invisible condition and being a gay or lesbian person who looks "straight". The interesting part of this is that I experience my life as a lesbian primarily as someone whose orientation is quite obvious and yet I experience life as a person with a chronic disabling condition as "able to pass". Any keen observer, or any person specifically interested in me would realize that I have limitations, they would probably notice that I am in pain even when I choose not to mention it; but the fact is that there are very few keen observers in this world and most people are far more interested in other things (like themselves) than they are in me. So by and large I can muddle along and remain in the disabled "closet" if that is where I want to be.
Concealing your real identity and hiding your condition, both come at a price. Never having served in India with the British Raj I have not fully perfected my "stiff upper lip" and hiding my pain and not utilizing aids (like my walking stick/cane) makes everything worse. It makes things hurt more and for longer, it makes my recovery time longer and more painful, and it sets up a plethora of future situations where people who don't know I have a problem will ask me to do things that I just can't do. In spite of this substantial weight of evidence I still want to hide sometimes and I can't loudly and proudly declare my condition. Yes, I can pass and yes, I sometimes choose that option. There are times when it is advantageous to conceal my weakness and because my condition is fundamentally invisible I have that choice!
So although I have no treatments or procedures that have helped me I do have a couple of HUGE positives that make my life a LOT easier. I have found doctors who believe me and who don't treat me like I am a malingering bludger... This is NOT the experience of all my Fibro Sisters. I have a partner (TLOML) who is always considerate of my situation, she checks in with me and gets my personal weather report regularly. She also runs interference for me with other people, at times "outing" me at a point when I would perhaps have remained closeted, but though in those cases I was pushed rather than jumping I really am glad because it makes life easier when people know and understand.
Tonight we are going to a February 29th party where people will be sitting on the floor to share a Syrian style banquet. TLOML has been onto it already warning our hosts that sitting on the floor is probably not workable for me and making sure that alternative seating will be available. I get a little embarrassed when people make a fuss but the longer term benefits of not exacerbating my problems far outweighs the few moments of awkwardness.
Invisibility; a curse and a blessing. It gives me freedom but also causes me to be the recipient of considerable disrespect at times. I guess the real problem, personally, is that it compromises my reality and taints my authenticity. I have been out and proud as a lesbian for nearly thirty years, I have supported my fellow travelers and defended the rights of all people to live their personal truths. So now I think it's time to summon Gloria Gaynor and blast "I am what I am, I don't want praise, I don't want pity!" Not just for me but for everyone who lives with disabilities and chronic illness, the more we all speak up, accept and declare ourselves, the sooner we will defeat the stigma of difference.
Showing posts with label visibility. Show all posts
Showing posts with label visibility. Show all posts
Tuesday, 28 February 2012
Sunday, 11 December 2011
Women Do Something (Continuing the conversation)
A couple of weeks ago I attended an event called Women Say Something and, naturally because I tell you guys almost everything, I blogged about it. Thanks to that first event and the wonders of Facebook I am now hooked in to some super cool active women, the kind of women who get off their arses and make an event like this happen. It seemed natural that I would go to the follow up event, after all it was free and I am broke, it's about feminist issues and I'm a feminist. Best of all the event was attended by the fabulous Kimberly Dark.
Kimberly is a sociologist and a story teller. She uses humour, irony and anecdote to open our eyes to the strange and interesting diversity of thought and perspective in our world. I feel privileged to have had the opportunity to attend and to enjoy her work.
Lots of very interesting topics were raised and discussed by the group. Many would be worthy of exploration and commentary. The thing that resonated with me most intensely was the need to hold to our beliefs and represent our points of view every day in as many situations as we encounter. One articulate young woman pointed out that thirty or forty years ago there was a huge gap in equality, it was blatant and gaping. It was easy to see the cause, to know what was needed in the fight for Women's Liberation, for the Women's Movement, for Feminism. So many things have changed and so many barriers have been broken down that it is more difficult than it was back then to simplistically categorize the target. Yet inequity still exists in every arena. As the young woman put it, "there are many small gaps rather than one large one".
I can't remember a time in my life when I did not believe that we influence the world one person at a time. Mostly, on a day to day basis, I just try to make people smile in the hopes that they too will make someone else smile. Long before that disgusting schmaltzy movie "Pay It Forward" claimed the high ground I believed in the difference small interactions can make. As a lesbian I have always been "Out and Proud" in virtually every situation I have lived through. This is how you combat homophobia. You keep showing people that gay people are just normal everyday people like them, they/we are their friends, co-workers, family etc. I don't think anyone has ever said this better than Hilary Clinton did recently at the Human Rights Day in Geneva, here courtesy of the Huffington Post is a transcript of her brilliant speech.. I digress...
Feminist is (as Girlwiththecane said in a comment on the last blog) still a dirty word.. But I don't really care what we call it (though it would be convenient to have a title that symbolically represented basically the same thing to everyone) but I do care about women and equality. I believe we need to not shirk the day to day responsibility of having the courage of our convictions. The courage to clearly state what we believe and why it matters to us. I believe that we need to be Out and Proud as women and as feminists (regardless of the title). We are 51% of the population, the world over, and we own less than 1% of the world's property.
Kimberly is a sociologist and a story teller. She uses humour, irony and anecdote to open our eyes to the strange and interesting diversity of thought and perspective in our world. I feel privileged to have had the opportunity to attend and to enjoy her work.
Me under the star with the star of the show, Kimberly Dark.
Lots of very interesting topics were raised and discussed by the group. Many would be worthy of exploration and commentary. The thing that resonated with me most intensely was the need to hold to our beliefs and represent our points of view every day in as many situations as we encounter. One articulate young woman pointed out that thirty or forty years ago there was a huge gap in equality, it was blatant and gaping. It was easy to see the cause, to know what was needed in the fight for Women's Liberation, for the Women's Movement, for Feminism. So many things have changed and so many barriers have been broken down that it is more difficult than it was back then to simplistically categorize the target. Yet inequity still exists in every arena. As the young woman put it, "there are many small gaps rather than one large one".
I can't remember a time in my life when I did not believe that we influence the world one person at a time. Mostly, on a day to day basis, I just try to make people smile in the hopes that they too will make someone else smile. Long before that disgusting schmaltzy movie "Pay It Forward" claimed the high ground I believed in the difference small interactions can make. As a lesbian I have always been "Out and Proud" in virtually every situation I have lived through. This is how you combat homophobia. You keep showing people that gay people are just normal everyday people like them, they/we are their friends, co-workers, family etc. I don't think anyone has ever said this better than Hilary Clinton did recently at the Human Rights Day in Geneva, here courtesy of the Huffington Post is a transcript of her brilliant speech.. I digress...
Feminist is (as Girlwiththecane said in a comment on the last blog) still a dirty word.. But I don't really care what we call it (though it would be convenient to have a title that symbolically represented basically the same thing to everyone) but I do care about women and equality. I believe we need to not shirk the day to day responsibility of having the courage of our convictions. The courage to clearly state what we believe and why it matters to us. I believe that we need to be Out and Proud as women and as feminists (regardless of the title). We are 51% of the population, the world over, and we own less than 1% of the world's property.
Courtesy of Girl's Guide to Taking Over The World
This fight has not been won.
This struggle is not over.
This complacency is killing us.
Every day in every interaction, we, the ordinary people not just the high profile organizers and activists, WE need to take this debate to our friends, our co-workers, and our families...
Stand up and be counted or stand down and be trodden on.
(As an aside some of the women were kicking on for a drink at my old stomping ground The Imperial but unfortunately I was starting to get that urge to be horizontal so I gave it a miss... maybe next time!)
(As an aside some of the women were kicking on for a drink at my old stomping ground The Imperial but unfortunately I was starting to get that urge to be horizontal so I gave it a miss... maybe next time!)
Monday, 24 October 2011
When good days are good for different reasons
I'm hopeful.
That is a vast improvement.
It isn't that I'm hopeful this wretched thing will go away, or even that some wonderful treatment will alleviate it. I'm not hopeful that I will get my youthful healthy body back or that I will get to live the way I used to. I am pretty resigned to having to go on dealing with this giant dump truck of ... well you know what's in the truck...
Today I tried a new doctor.
My opening line was, "I'm not sure if you can help me but I'm looking for a doctor who understands Fibromyalgia and I haven't had much luck." Oh what shall I call this doctor... Dr McDelicious might be a little too familiar, and Dr McNotBadConsideringYou'reAPom is a bit too long, Dr McReallyListening is a tad too sincere, and Dr McFocused is a smidgin too brusque... how about DrMcLovely... that works.. Because she was lovely but they are all true. She gave me 45 minutes of her time.
An Englishwoman she has moved to Australia in the last 6 months (I think she might have married an Aussie bloke but I am only guessing). I checked her out on the web before the appointment and she already had a couple of bonus points with me cause she also works for Family Planning (kind of the Aussie version of Planned Parenthood). FMS isn't her specialty (I have yet to find a specialist for it) but she seemed to know what she was talking about and best of all, BEST OF ALL, she did not treat me like I was either whining, lying, exaggerating, faking, crazy or stupid. She has a plan. She sent me for a series of spinal X-Rays (to find out if a pinched nerve is causing my numb toes and foot), tomorrow I have a complete set of blood tests done, and when she gets that back she wants to refer me to an immunologist who specializes in CFS. (Yay!)
I wish I had a picture of the look on her face when I told her what the Rheumatologist (Professor McAwfullyCute) had told me I have. She made me repeat it (AUSRRIWCP) slowly so she could type it into her notes, all the while with a decidedly McLovely skeptical raised brow.
On the downside my blood pressure was quite elevated and that is NOT normal for me, I told Dr McLovely that I was quite anxious about the visit and maybe that sent it up and she told me to not be frightened next time and to remember she isn't scary, (if that doesn't deserve the McLovely title what does?) I also was having a bout of vertigo (unfortunately it is more than a Hitchcock movie) and my balance was totally shot. The body wasn't working all that well today and it was all quite a slog but it was still an UBER GOOD DAY!!!
NB for my North American mates a POM is an Aussie slang term for someone from England... I have been told it's derived from the letters on the back of the convict's clothing P.O.M.E. (Property of Mother England)
That is a vast improvement.
It isn't that I'm hopeful this wretched thing will go away, or even that some wonderful treatment will alleviate it. I'm not hopeful that I will get my youthful healthy body back or that I will get to live the way I used to. I am pretty resigned to having to go on dealing with this giant dump truck of ... well you know what's in the truck...
Today I tried a new doctor.
My opening line was, "I'm not sure if you can help me but I'm looking for a doctor who understands Fibromyalgia and I haven't had much luck." Oh what shall I call this doctor... Dr McDelicious might be a little too familiar, and Dr McNotBadConsideringYou'reAPom is a bit too long, Dr McReallyListening is a tad too sincere, and Dr McFocused is a smidgin too brusque... how about DrMcLovely... that works.. Because she was lovely but they are all true. She gave me 45 minutes of her time.
An Englishwoman she has moved to Australia in the last 6 months (I think she might have married an Aussie bloke but I am only guessing). I checked her out on the web before the appointment and she already had a couple of bonus points with me cause she also works for Family Planning (kind of the Aussie version of Planned Parenthood). FMS isn't her specialty (I have yet to find a specialist for it) but she seemed to know what she was talking about and best of all, BEST OF ALL, she did not treat me like I was either whining, lying, exaggerating, faking, crazy or stupid. She has a plan. She sent me for a series of spinal X-Rays (to find out if a pinched nerve is causing my numb toes and foot), tomorrow I have a complete set of blood tests done, and when she gets that back she wants to refer me to an immunologist who specializes in CFS. (Yay!)
I wish I had a picture of the look on her face when I told her what the Rheumatologist (Professor McAwfullyCute) had told me I have. She made me repeat it (AUSRRIWCP) slowly so she could type it into her notes, all the while with a decidedly McLovely skeptical raised brow.
On the downside my blood pressure was quite elevated and that is NOT normal for me, I told Dr McLovely that I was quite anxious about the visit and maybe that sent it up and she told me to not be frightened next time and to remember she isn't scary, (if that doesn't deserve the McLovely title what does?) I also was having a bout of vertigo (unfortunately it is more than a Hitchcock movie) and my balance was totally shot. The body wasn't working all that well today and it was all quite a slog but it was still an UBER GOOD DAY!!!
NB for my North American mates a POM is an Aussie slang term for someone from England... I have been told it's derived from the letters on the back of the convict's clothing P.O.M.E. (Property of Mother England)
Tuesday, 11 October 2011
Being "other" - Other than what?
I think my self image is symbolized by a series of interwoven and overlapping bell curves and spectrums which contrasts with the equally interesting series of interwoven and overlapping bell curves and spectrums that depict the way others view me. Like two fabrics with the same pattern in different colours.
Maybe this is not making sense... but imagine that nearly everything could be measured on a bell curve... How tall are you? 8 foot is on the extreme right - 3 foot is on the extreme left and my 5 foot 6 inches is in that amalgamous clump in the middle. So it is with sexuality and also with disability (in its many layers). Curves, spectrums and methods of measuring people and ranking them against one another.
Don't go screaming out that people are people and we are all individuals - I know we are... in fact that is the very topic of this discussion!
The girlwiththecane made an interesting comment on my last blog that got me thinking... She was referring to my parallel of butch being "visible lesbian" like certain physical disabilities are "visible disability" and mentioned the universality of being "other". But is it "universal" and what is "other"? Does a brunette cheer leader feel some sense of "differentness" (aka "otherness") because she is not blonde? Does being overweight elicit the same feelings of "otherness" even though there are so many people who share that situation? I know that one can feel an "otherness" when overseas or when culturally displaced... In fact my very name "Displaced" derives from this feeling of not belonging. Is there anyone who doesn't feel a sense of "otherness"?
Even in our own families, where surely we have more commonalities than with strangers, most of us feel some sense of "otherness" of being "the black sheep" or of having been born into the wrong family.
Really is it only the narcissist (clearly the extreme edge of the bell curve or spectrum of self assuredness and ergo "other") who, in his or her delusions of perfection, sees themselves as belonging?
I must speak only for myself... I don't fit, I never did and I never really knew why. I wasn't like other kids and I wasn't like my family. When I finally understood that I was a lesbian in my very early 20's I attributed this sense of "otherness" to my previously misunderstood sexual preference... I guess I figured that others had felt or sensed something in me that I had not accepted or recognized yet. Then I learned that I am also not like other lesbians and I don't really fit in with that crowd either. Now I have this annoying issue with my invisible semi-disability and I feel like I don't quite fit with either the fully healthy, the sick or the disabled.
The people who I connect with are few and far between - they shine like gemstones catching a flicker of light on the sands of an endless beach, when I catch that glimmer I set my course in that direction and hope to see the flash again because I know how truly rare those gemstones are. I seem to find one, or if I am lucky two, per decade. Even then it is not that we are so similar, or that we have any sense of "sameness", it is more that we value and appreciate our particular versions of individual "otherness".
My life in a nutshell;
I am NONE OF THE ABOVE (and to be quite frank - nor are you.)
Maybe this is not making sense... but imagine that nearly everything could be measured on a bell curve... How tall are you? 8 foot is on the extreme right - 3 foot is on the extreme left and my 5 foot 6 inches is in that amalgamous clump in the middle. So it is with sexuality and also with disability (in its many layers). Curves, spectrums and methods of measuring people and ranking them against one another.
Don't go screaming out that people are people and we are all individuals - I know we are... in fact that is the very topic of this discussion!
The girlwiththecane made an interesting comment on my last blog that got me thinking... She was referring to my parallel of butch being "visible lesbian" like certain physical disabilities are "visible disability" and mentioned the universality of being "other". But is it "universal" and what is "other"? Does a brunette cheer leader feel some sense of "differentness" (aka "otherness") because she is not blonde? Does being overweight elicit the same feelings of "otherness" even though there are so many people who share that situation? I know that one can feel an "otherness" when overseas or when culturally displaced... In fact my very name "Displaced" derives from this feeling of not belonging. Is there anyone who doesn't feel a sense of "otherness"?
Even in our own families, where surely we have more commonalities than with strangers, most of us feel some sense of "otherness" of being "the black sheep" or of having been born into the wrong family.
Really is it only the narcissist (clearly the extreme edge of the bell curve or spectrum of self assuredness and ergo "other") who, in his or her delusions of perfection, sees themselves as belonging?
I must speak only for myself... I don't fit, I never did and I never really knew why. I wasn't like other kids and I wasn't like my family. When I finally understood that I was a lesbian in my very early 20's I attributed this sense of "otherness" to my previously misunderstood sexual preference... I guess I figured that others had felt or sensed something in me that I had not accepted or recognized yet. Then I learned that I am also not like other lesbians and I don't really fit in with that crowd either. Now I have this annoying issue with my invisible semi-disability and I feel like I don't quite fit with either the fully healthy, the sick or the disabled.
The people who I connect with are few and far between - they shine like gemstones catching a flicker of light on the sands of an endless beach, when I catch that glimmer I set my course in that direction and hope to see the flash again because I know how truly rare those gemstones are. I seem to find one, or if I am lucky two, per decade. Even then it is not that we are so similar, or that we have any sense of "sameness", it is more that we value and appreciate our particular versions of individual "otherness".
My life in a nutshell;
I am NONE OF THE ABOVE (and to be quite frank - nor are you.)
Sunday, 9 October 2011
To be seen or not to be seen? - That is the question
Is it better to have a visible disability and suffer the stigma of everyone who glances your way gawking and pre-judging you? Or is it better to have an invisible disability that allows you to "pass" as "normal" (whatever the hell that is) but have to deal with the lack of acceptance of your condition by the people you meet?
One of my best friends has no arms - well, let me correct myself and honour her partial arms, she has a couple of inches below the armpit - hard to find a more visible disability without the flashing neon of a wheelchair. I on the other hand have an invisible problem, until recently it was diagnosed as Fibromyalgia but now my new doctor tells me it is "an undampened stress response resulting in widespread chronic pain"... (Please use those letters AUSRRIWCP to come up with a catchy acronym for me! I am SCRABBLE challenged.) Anyhoo... back to the matter at hand. We, my armless friend and I, have discussed this issue and we can both see the other side of the coin. I can only imagine what it is like to be stared at everywhere you go (mind you she is beautiful and would be stared at anyway) and she can only imagine dealing with people who discount your situation because they can't see it.
Interestingly I think there are parallels in the lesbian community... Butch women are often quite obviously lesbians and would need to abandon their authentic selves to "pass" as straight and femme women go through life only ever having to tell the people they want to tell. Yet I have heard many femme women express annoyance at having to make that revelation and even greater irritation at having to deal with the denials of people who insist that they could be straight if they felt like it because they look just like a straight woman.
If, and I know this is unlikely, anyone is out there reading this post - I would love to hear your thoughts.
One of my best friends has no arms - well, let me correct myself and honour her partial arms, she has a couple of inches below the armpit - hard to find a more visible disability without the flashing neon of a wheelchair. I on the other hand have an invisible problem, until recently it was diagnosed as Fibromyalgia but now my new doctor tells me it is "an undampened stress response resulting in widespread chronic pain"... (Please use those letters AUSRRIWCP to come up with a catchy acronym for me! I am SCRABBLE challenged.) Anyhoo... back to the matter at hand. We, my armless friend and I, have discussed this issue and we can both see the other side of the coin. I can only imagine what it is like to be stared at everywhere you go (mind you she is beautiful and would be stared at anyway) and she can only imagine dealing with people who discount your situation because they can't see it.
Interestingly I think there are parallels in the lesbian community... Butch women are often quite obviously lesbians and would need to abandon their authentic selves to "pass" as straight and femme women go through life only ever having to tell the people they want to tell. Yet I have heard many femme women express annoyance at having to make that revelation and even greater irritation at having to deal with the denials of people who insist that they could be straight if they felt like it because they look just like a straight woman.
If, and I know this is unlikely, anyone is out there reading this post - I would love to hear your thoughts.
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