Book: Life Disrupted (Part II)

Hey guys,

I wanted to fill you in on Life Disrupted: Getting real about chronic illness in your twenties and thirties by Laurie Edwards.  Here are some quotes I liked from the second third of the book.  This section was about disclosure and your public life.

"I often went to ridiculous lengths to avoid "looking sick" or standing out in a crowd.  When does what we do to look healthy for others actually become unhealthy for us?"  (When I first started wearing an AFO - I always wore pants so no one could see it, then I didn't have to get stares and answer questions.  Well, this of course made me very hot in the summer which wasn't helping.  One day I wore shorts when I went to the grocery store and magic!  NO ONE CARES.  No one cares about the shoes that I have to wear either - just me.  And well Oprah who stated on a show about high heels that she didn't understand why women would ever wear tennis shoes to work)

"In spending so much time reacting to the details I thought other people would notice or care about, I was giving them the unwitting power to define me by my illness"

"The true test of power and security is when we can show perceived weakness and define ourselves by our ability to look past them"

"We want people to understand why we're not working or why we need a handicap tag even if we're not in a wheelchair.  We don't want to be perceived as lazy, weak, or pampered." (I have had 3 doctors fill out paperwork for a handicap tag and for 2 years I have let it sit there because I'm too worried about how it looks when I get out of the car, which really helped me realize that I'm the one that is judgmental about who uses handicap spaces).

"The point where you have to disclose is when your illness starts to get in the way of your ability to perform your job and the quality of that performance."  (For me that was pretty obvious since I couldn't move my arm to treat patients)

"When talking to my superiors, I've chosen to stick to the most basic facts, the ones that impact their time and their ability to satisfy the customer without burdening them with the intricacies of the disease.  Symptoms are more important that naming it.  The more specific we can be about the relationship between the symptoms and productivity, the better."  (It goes into a lot more detail about how to state limitations in terms of symptoms instead of just saying, I have XYZ).

"There is an underlying potential to associate 'sickness' with 'weakness' in the public domain."

"Asking for accommodations doesn't make you difficult - the tone and attitude with you request them does."  (This was helpful for me because I don't like to be trouble).

"I stopped looking at life in terms of getting back to normal and realized that this new reality was my normal."

"Acceptance isn't easy but it signals wisdom, not defeat."

"There is a huge difference between simply acknowledging limitations caused by health conditions and actually responding to them in a productive way.  Denial was my preferred default method for years, and while I think a certain amount of denial is necessary to get by, the process of acceptance really depends on moderation and maturation."

[Michela11]

I was eligible for a Mobility Parking tag after my second known exacerbation in 2008 (that's what they're called in Australia). I still have issues with it, although I'm entitled to it and need it. People often look at me weirdly when they see me get out of the car and walk. I often DON'T park in a designated car spot, because I always think "There's someone who needs this spot more than me".

The issue of perceived weakness is interesting, and I too relate to that. My husband and I have just been talking about it. I was remarking on what a lonely condition MS is, as no-one wants to mention it (and I'm talking about family and people who know I have MS). He said that I push myself too hard to my detriment to prove that I "can do it" and that I'm not a liability at work, with my family or friends. And that people don't want to bring MS up because it's not "obvious". He's right. And that's about my fear of being perceived of being useless, or incompetent.

I think the "weak animal" syndrome applies here too. Recently I spent a day at a fun park, on my son's birthday, in a wheelchair. I had just broken my foot on a toboggan ride. I was adamant I did not want to spoil the children's day, and told my husband if he would push me in the chair, we'd get my foot seen to later in the afternoon (which we did). What an eye opener that was! I just didn't exist while in that chair. Everybody who came near us judiciously avoided meeting my eye. They so obviously avoided looking at me, that it was obvious why! What a lesson.

Sounds like a very interesting book. Thanks for bringing it up. Sounds like something I need to read!

[GrannyJo6]

Sounds like an excellent book! I could relate to a lot of what you quoted. Hmmm.

[sunnyinthesnow]

Thank you for posting this!

[Ufrustrated2]

excellent statements and thoughts!

i keep thinking i can do some activities i so loved. i still have hope, yet the reality is i am not doing them now due to some of this disease and its conditions. disk disease isn't helping either with the [want] to get back to extreme sports.

no one in my aa groups even related or acted like they heard me when i would mention ms so gave up that and now go to ms groups, where they completely and humorously understand. i take that back, two buddies there listen but only breifly and seem never to ever bring it up.

i'm still in the gray area of leaving some part of my life behind and moving towards a new and a bit different life. another life process with no road map, but trial and error.

i mean like NOBODY seems to hear you when you mention ms, unless they have it or have some empathy about it.

thank goodness for this site and the ms group i now go to and a few friends.

thanks for the topic

just IMHO

[SickMomma_PDX]

Laurie also blogs at achronicdose.blogspot.com

Even though I was way over 30 when her book was published, I found it very inspiring too. Lots of wisdom in there.

[ashleyPT]

Yeah I kind of wish the book didn't have that twenties and thirties subtitle.  I guess she was trying to reach a specific audience, but I would hate for someone to not read it because they didn't fit the age group.

[SickMomma_PDX]

I suspect having that niche (young folks with chronic illnesses) helped for selling the book to publishers, although I haven't asked Laurie about that. Plus it's where she is/was at the time, so I can understand her focus. But I totally agree with you, and when I reviewed it on my  blog and on Amazon back when it came out, I emphasized that too! :-) Her blog was the first one I found after I got sick in 2007, and I remain impressed at how well she writes and how well she's able to make people feel the commonalities rather than the differences between their health issues.

Er, I don't know if I should make clear, but I wasn't paid for the reviews I did on her book, either on my blog or on Amazon, or here for that matter! I'm just a huge fan of Laurie's writing. :-)