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.
kudos, dear Displaced.
ReplyDeletePffft Jazz... you and I both know that we are just getting by as best we can. (Thanks :))
DeleteGreat post! Striking a balance between privacy and advocacy is, I think, something all of us with invisible illnesses wrestle with. I completely agree that it's important that we own who we are and be our true selves. It's the only road to acceptance, of ourselves and by people in general.
ReplyDeleteThanks for the support fellow traveler!
ReplyDeleteI agree with Sjogrens Style - finding that balance is very difficult! Displaced, I like your comparison to be "closeted" and being "out." Who among us with invisible illness hasn't "come out" only to lose friends and essentially face some discrimination due to a lot of misconceptions about chronic illness. Like any other cause, this requires people to be "out" so that these misconceptions can be altered, but we are also faced with living in this world as it exists now.
ReplyDeleteLike you, if people took the time to really look, they might not find my illnesses to be so invisible. But I find people will often be quick to judge but slow to see. My sensitivities to these judgments make me want to hide in that closet.
There have been many instances where it has been painful to walk, but I chose not to use the motorized cart at the store or I chose not to go to the store at all, because I knew that I couldn't make it through the store walking and I feel very judged while using the carts. The, "You don't really need that," looks are less than subtle. Following one of my surgeries, I hadn't been out of the hospital long and even using the cart was a struggle. While I was going through the store, an employee came up to me and asked me if I was done with the cart yet. There was no shortage, there were many plugged in and waiting to go, she just didn't think I needed it. I meekishly gave it up. My mom was in the store with me but in a different part. She came rushing over and essentially chased the woman as she was taking the cart back to the front of the store to plug in telling her that I was recovering from surgery. The woman came back over and apologized. But it shouldn't have happened in the first place. There are many days when I'm not fresh out of surgery that I also very much need that cart. I shouldn't have to explain my reasons why in the middle of the store.
But again, people do need to know about people like us and our reasons if they are to stop judging and these type of instances are to change. I am glad that we can build a blogging community to help strike that balance. Thank you all for raising your voices and raising awareness.
Displaced - I am also glad that you have a partner who so adamantly advocates for you. I'm sure there are times where you wish she spoke a bit softer, but having someone in your corner can be a huge blessing.
I didn't realize how long that was until I hit publish. Sorry for the long-winded comment. I guess you really got my mental gears turning!
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