Full Disclosure

April4


In Plain SightBefore the wheelchair and the Prednisone, I could hide my illness in plain sight.  This is me right after a hospitalization.

Before I was in a wheelchair and now a walker, my illness was pretty invisible.  Though there are many downsides to invisible illness, one thing I did appreciate was that it gave me a choice of how much I wanted to share if anything about my illness.  If I wanted, I could mostly hide my symptoms, and no one had to know.  But my wheelchair became a physical sign of my illness and suddenly everyone, everywhere I went, instantly knew something was wrong.  And the big question that lingered in the air was “WHAT?”

I have always been a very open person.  Though like everyone I want to be accepted, I really don’t fear rejection.  Or at least I’d rather be rejected up front by someone I just met than a close friend far down the line.  So my policy about my illness has always been to share as much as the person I’m talking to in curious to know.  And the interesting thing has been that this has brought many blessings in itself.  When I share about my illness honestly and openly, I generally find that people respond with genuine empathy.

Sharing so openly has also given me the opportunity to help many people.  There are so many people out there going through similar experiences to me themselves or have a loved one or friend who is going through something similar.  I find that when I follow my intuition and share I find I’m speaking to someone who can benefit from what I have to say.

People are usually dying to ask me why I’m in a wheelchair or using a walker, but are afraid of being rude.  So I’ll steer the conversation that direction and put them out of their misery.  In this fashion, I often find myself sharing about my various illnesses with people I just met.  Sometimes I share the story of my physical illness and sometimes I share my struggle with mental illness.

Sometimes sharing doesn’t go very well.  Though most people are supportive and understanding, there will always be the ones who are judgmental or want to tell me what to do.  Either way I never regret sharing about my illnesses.

I find it’s important though that when I talk about myself, my illnesses aren’t the only thing I share about.  I am not my illness, and if I can communicate one thing that sticks with the person I am talking to I hope it is that people like me with chronic illness are so much more than the sum of their diagnoses.  I am also a women with hopes and dreams, talents and aspirations, fears and weaknesses.  I am human just like everyone else.  I am a graphic designer and a game designer and a novelist and a blogger and a scrapbooker.

I hope I never lose my desire to share fully and genuinely, and that I never forget to share the most important thing of all – what makes me who I am.

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2 Comments to

“Full Disclosure”

  1. On April 5th, 2010 at 3:15 am Hayzell Says:

    Great post! I whole heartedly agree that one’s identity goes beyond illness and making sure you put your entire self out there while acknowledging what may be obvious or itching another person’s curiosity is important. Disclosure seems to remove the elephant in the room while helping to reinforce that what’s on the inside counts.

    I also have seen that a lot of people with chronic pain/illness sometimes loose their sense of self as a consequence of the nagging aspect of pain being constantly present or changes that may occur in lifestyle (loss of job or physical mobility). Consequently, identity may become that tied to illness because they are constantly feeling it or feel they have lost their old self.

    Reply to Hayzell

  2. On April 6th, 2010 at 7:50 pm Jeanne Says:

    Hi Lauren,

    This is a great post. The vast majority of my 28 years (out of 41) living with chronic illnesses has been “invisible” but there have been occasions here and there where I used a wheelchair or some other visible assistance… and I do have a parking tag – for the really bad days where my neuropathy (or fibro or other illnesses) makes walking very painful. It is interesting to note how differently people behave towards the very same person when the invisibility/visibility border gets crossed!

    Like you, I usually share about as much about my health issues as the person seems interested in knowing. This system usually works. Sometimes, I miscalculate how much a person truly wants to know or can handle and “over-share”. I rarely “under-share”.

    I do try to be a bit more cautious as the years go by before opening up topics with people that may end up making one or both of us feel awkward in the future. (Usually the awkwardness would be for the other person who has trouble knowing how to handle my illnesses. Rarely would the awkwardness be on my side unless that person tries to condescend to me and tell me what they think I “should” do to “get better”).

    Some people don’t fully comprehend that chronic means chronic! Well-meaning individuals who try to bully me into using a particular supplement or exercise form tend to really annoy me because I find it insulting that they think they know more about my illnesses than I do when I have lived with them for years and they have barely heard of them! It’s frustrating.

    I try to create awareness of my conditions and educate people about them since so many of my illnesses are of the classic “poorly understood” variety.

    My most recent blog post has a Ted.com video that I am guessing you’ll like as much as I did. It delves into this whole sense of identity that comes out of living with adversity… and the opportunities adversity can create. :) I just LOVE the video because it captures a theme that really resonates with me.

    :)

    Take care,

    Jeanne

    Reply to Jeanne

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