July 10, 2011

So What if I Wear My Sunglasses at Night?

For the month of July, WEGO Health is focusing on empowerment.  To this end, they have suggested a few blogging prompts, one of which really caught my fancy.  #4 on their list of ideas is about having convictions.  That's funny, I have a list of quotes I love, and one of the first on it was "It is a blessed thing that in every age someone has had enough individuality and courage to stand by his own convictions" (Robert Ingersoll).  So, I guess I'd better list 5 things I "will not apologize for".  You don't have to agree with me, but instead of arguing, let's discuss...and maybe you'll post about YOUR convictions too!  Let me know where they are and I'll come read them!

I will not apologize for...

1. 'Wearing my sunglasses at night', or Expecting the support I deserve:  There are specific sources from which I expect support - family, close friends, & my employer for example.  What exactly I expect various as appropriate for the source - from my employer, I expect respect & reasonable flexibility, whereas from my family I expect not to be mocked and that they will not look on me as lazy.  (That's where the sunglasses comes from - I get a comment from a family member or two when I wear them after they think it's 'dark enough'.  It really grinds my gears, especially because it has NO impact on them whatsoever.)  I think I deserve these things because of how I approach these sources - I am respectful & considerate of my family/friends & their needs, and in dealing with my employer I am conscientious of their concerns & need to be profitable & fair to all employees.  In both cases, I strive to add value every chance I get.  I don’t expect things without working for them, but since I work hard, I have earned & deserve them.

2. Being afraid of things about my future:  I have some real, founded concerns about my future - but that doesn't mean anyone should roll their eyes at me (which they do).  For example, it bothers me to know that I may wind up in a wheelchair, have increased chances of problems with pregnancy & motherhood, or that with Sjogren's I am 44 times more likely to develop Lymphoma.  There is both statistical, scientific support for these concerns as well as 'experiential' support in the experiences of people I know.  They are real risks.  I have proven myself to be on the whole optimistic & level headed, but find I'm made out to be a hypochondriac, catastrophosizer, and attention-seeker who blows things out of proportion.  I’m as entitled as anyone else to my fears.  I don’t act like one will definitely occur, and like everyone else I hope I’ll have the happiest life possible - but I know they’re real, and I don't like them.  Instead of being mocked or marginalized for expressing them, I believe the listener should try supporting me and reminding me that they will continue to should I ever run into these problems.

3. Going public about my conditions:  Disclosing your conditions or challenges is never an easy decision, and doing so on an international stage for all the world (and your current & future employers) to see simply isn't for everyone.  I respect the decision many people make not to disclose, even if I sometimes disagree with them, as their choice based on valid risks.  But as I see it, someone has to do it.  The reason so many risks (real & perceived) exist is because the misconceptions & fears ignorance of the facts causes in society - the public needs to know, which means someone has to tell them.  To end legal segregation, someone had to face their fears and make a public spectacle; the principle here is no different.  And it's not for everybody - but we each have a job we need to do in this world and for some of us, it's public health activism.  Besides, as I posted before, “I gotta be me”.

4. Being frustrated by the general impression out there that Lupus is ‘worse than’ SjS or other conditions:  Please listen carefully - I'm glad for increased awareness of autoimmune diseases, grateful for every battle I don’t have to fight, and never begrudge those with Lupus (and/or other things) any support they get.  I know Lupus is still vastly under-recognized & misunderstood.  But it’s not necessarily “worse”.  My own mother (who is normally an example of the self-educated patient) still comments that she hopes at least I always have 'just' Sjogren's and that it never 'develops into' Lupus (insert frustrated hands-in-the-air here); my mother-in-law can't seem to remember that they are different conditions; even someone on a Facebook group yesterday posted that they were diagnosed with SjS and RA, but 'at least not Lupus'.  It blows my mind...personally (and this is just my own impression from patients I've met), I'd be far more upset to be diagnosed with RA than Lupus, but that's besides the point.  They are each different conditions, and which is "worse" depends on who you are and how your case progresses.  Take those three, SjS, Lupus, and RA - a progressed case of SjS can be WAY worse than a mild case of Lupus; RA in one patient may be controllable whereas Lupus in another may run amok; and even two people with the same condition will have entirely different experiences.  It’s a case-by-case deal.  I don't want a diagnosis of Lupus, nor one of RA, but my concerns about the dry mouth and problems with my shoulder are at about the same level.

5. My priorities:  Focus here on the first word - MY priorities.  MINE.  ME ME ME.  Obviously I'm not being self-centered, but I am responsible for myself so I have to make my own decisions.  They affect ME.  My priorities don't have to be anyone else's (well obviously Shawn and I have to align ours but let's not nit-pick this one), and therefore they won’t always make sense to others.  They don't have to.  At different times I've had different priorities – in college it was one organization over another, after graduation it was work over social, at a higher long-term level it's family over work.  For a while the CPA exam had to wait while I stuck it out trying to adjust medically to a new job, with Prednisone & other challenges; I knew I couldn’t do that AND handle the stress of this high-pressure exam process.  Even choosing specific causes to support has to be prioritized, and which I choose won't be the same others might choose…I work on SjS projects, choose to participate in one event over another, etc.  I welcome questions about why I make these choices, why something is a priority for me, or discussions about why some people make a different decision - but not insinuations that my priorities are 'wrong'.  Frankly, they're just not something others get to judge.

I guess this entry seems a little argumentative...and while that's not my intention, I suppose it is a reality of life.  Having convictions means standing by them when challenged.  The good news is, I will also support you as you stand by yours.  I want to thank WEGO for encouraging me to explore this head-on, and extra thanks to you for hearing me out:)


  1. Great post - thanks for the reminders!

  2. It doesn't sound argumentative at all. Well, that's my opinion! I pretty much think the same way. Great post!

  3. Funny, I wear my subglasses at night and inside when necessary. I have eye usage and movement pain as well as severe light sensiticity from a trigeminal neuralgia ( a severe and often disabling facial pain disorder.) I get asked about them and unfortunately I have no expectations of support as it has never been there. Thanks for putting some of my thoughts and feelings into words.
    (author A PAINED LIFE, a chronic pain journey)
    The pained life, 30 years and counting


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