Taming the Wolf

The ups and downs of life as an early 30s career girl trying to balance the various demands of life, including fibromyalgia. autoimmune and dietary issues. Somedays I succeed more than others, but it’s an adventure…

Could I Have Lupus? April 1, 2009

Filed under: Education,lupus,Lupus Foundation — jwz1978 @ 9:37 pm
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Me, I already know the answer to that question, and sure enough, I could.   But for others, lupus is not a disease that comes to mind when things start to happen with their health.  It may not be the first thing (or twentieth) thing your doctor will think of.  And it’s hard to try to put all the pieces together and realize that certain things (like that annoying rash over your cheeks) can actually be a symptom of a serious condition.  But now, thanks to a new public education campaign, this might change.  I’m so excited to see this campaign.  Not only is it important to make people (especially women) aware of lupus for their own health, but personally, I love the idea of increased awareness of lupus in general.

As I worked these past few months to sort through and deal with my health problems, I realized a couple of things.  One, I was hesitant to talk about my health (for a variety of reasons) and two, when I did talk about it, most people, even if they had heard of lupus, had no idea what it actually was (or even just auto-immune in general).

I was hesitant to talk about my health issues in part because I didn’t want it to affect the way people viewed me at work (and really, who wants to be that girl in the office whining about being sick all the time?).  I didn’t want people to shy away from giving me projects or take me out of projects because they were worried about if I could handle it or because of other similar concerns.  So far, that has not been the case, and I hope it stays that way.  The other reason I was hesitant though, was because in some ways, I was almost embarrassed.  Embarrassed isn’t quite the right word, but it’s all I can come up with to describe.  I think part of the problem was that lupus and similar auto-immune conditions almost seem like something that kept “hush-hush”, not conditions to be discussed with the world at large.  I know though, that there is NOTHING to be embarrassed about.  But I don’t think that it’s uncommon for those with chronic illness to feel a bit ashamed about their conditions, despite there being no reason.  I did find that the more I talked about my health and the problems associated with a flare up, the easier it was to share more.  But  there’s almost a line.  I don’t want pity.  I do want understanding, and I do appreciate concern.  I don’t want to be treated any differently.  I want people to bed educated, and understand (to the point they can).  With lupus being such an unknown though, most really don’t.  I don’t want people to think I’m making excuses, to wonder why some days I seem good but others, I look like I got hit by a truck or I move slow or I have to sleep and am not in the office until late.

This is where I think a public education campaign can help.  While I really hope that this government campaign (in conjunction with the Lupus Foundation of America) makes an impact quickly, I realize more and more that those of us with lupus have a role to play in this education campaign too.  I do think that by talking about lupus more, and our struggles with it, that we put a face to the disease.  By putting a face to it to friends, family and coworkers, it makes it real, makes them realize that this is a health problem that doesn’t just affect “other” people (or in some cases, makes them aware that there even is such a thing as lupus).  I’m still not 100% comfortable with talking about it, but I’m getting better.  And talking about it had an added bonus for me, as in talking to friends, I was able to make connections with others who share the same struggles and issues, and at that time (and now) talking with them turned out to be exactly what I needed to help me deal with it all on an emotional level.

So please share the information about the new public awareness campaign.  Information is available at: http://couldihavelupus.gov or through the

 

Find a Lupus Walk near you March 10, 2009

Filed under: fundaising,Lupus Foundation,Misc,support,walk — jwz1978 @ 6:59 pm

Support the Lupus Foundation of America and those you know and love affected by lupus…find a walk near you and participate!  http://www.lupus.org/walk