Here we are again~ National Lupus Awareness Month. International Lupus Awareness Day is May 10th. In Oregon, SB348 (Senate Bill 348 designates May of each year as Lupus Awareness Month and makes May10, 2011, Oregon Lupus Day.) reflects the same awareness calendar, spotlighting lupus on behalf of many of us living with lupus…or does it?
I’ve been at this blogging and social media stuff for a few years now, so I am used to the awareness and advocacy commitments made in other states. In my own state, I’ve grown used to the silence in those areas and have backed off on trying to understand what makes Oregon either so private or so uninterested. Actually, so have many organizations, services and programs. From what I’ve learned, we don’t tend to join organizations because we don’t want them asking us for money or to volunteer our limited energy for events. Both are reasons I can relate to, which is why I’m not a non-profit.
Yet, it never fails~ I will be in the midst of a conversation with a bank clerk, fellow coffee addict waiting to order, librarian, hair stylist, nurse, my daughter’s teacher, and others, when they will share how they know someone living with it. The topic usually comes up when people ask me what I do for a living and I mention that I am a wellness facilitator. Naturally, that will require a little more discussion and up comes the ‘L’ word – “lupus”. What I can always count on at that point is that they will utter the phrase: ”Oh, I know someone with that” followed closely by either:
a) “She’s really having a hard time.” ; or
b) “She’s doing pretty well.”
We all seem to being doing okay, but no one really knows. The State doesn’t keep track of lupus and lumps it in with arthritis. Rarely is it listed on a death certificate and medical providers don’t have the time to get involved with surveys or questionnaires to help us learn more about who we are. My own rheumatologist doesn’t even believe I have lupus anymore, because I don’t show any signs of it in my labs or symptoms. More specifically, he suggests that I never had it to begin with, because it doesn’t really happen here in Oregon due to our overall racial demographics. Yes, here in Oregon, despite it being predominantly Caucasian, there are people living with lupus, doc. Do your research and you’ll see there is a particular group of us with lupus who present differently, but we still have lupus. My feathers were a little ruffled by his comment, mainly because I work hard at managing my lupus, and there he is minimizing it all. I think the hardest part is really getting a clear picture about what lupus is and finding some agreement among all of the communities who are working/living with it.
In the last couple of years, I’ve tried to come up with projects that reflect the month-long lupus activities by approaching ‘awareness’ in a different fashion, to compliment everyone else’s work. The use of social media and blogging has increased exponentially, offering more to read, learn and take part in than ever. I know that readers will not have any trouble in finding stuff and probably more trouble in keeping up with all of it. So, that leaves me with the question: Where is my place, on the part of the silent Oregon lupus majority, in reflecting what we here think about, need to live well with or can benefit from regarding our lupus.
I’m at a loss. Not because I don’t think Oregonians have lupus, but because I don’t have enough to go on due to their lack of voice. I am uncomfortable in representing Oregon, which MLWT has grown to be, not really knowing my own community.
I have done a little research and am busy in the community these days with events, workshops and classes, collaborations, referrals and my direct services. However, in order to keep things growing, I have had to expand from lupus out towards autoimmune and other lesser-known chronic illnesses. Even though I hoped MLWT could be a hub for those with lupus, I have been excited to see that by including and incorporating what I do here has overwhelmed me with a sense of comfort to see how much we all actually share rather than differ in.
This month, I’ll be writing more frequently and it will be covering many aspect of living with chronic illness, not just lupus. I hear from more people with fibro than lupus, and I want to be sure to commemorate National Fibromyalgia Awareness Day in their honor. I will be hosting guests, both locally and nationally, to write about what they know, what they do and what they recommend. I’ll be highlighting some books and tools that are valuable in strengthening wellness self-management. I will introduce more specifically some of the work I do and how I do it. I will be spotlighting some local health resources and reviewing some of my favorite places to visit on the web. I will be busy with Living Well with Chronic Conditions classes and starting the pilot exercise class through the Arthritis Foundation. I will be heading up to Seattle to help with the LFA’s Pacific NW Chapter support group facilitator training this month (it will be here in Portland next month on June 11th). These are just a few things I do regularly, but I will take this month to make things more visible. Maybe if I open up about who I am, so will you.
My calendar is beyond full and I know I am going to be working over-time, challenging myself in practicing what I preach: balance. However, I think that if I get busy writing about our lives as a collective of experiences, rather than focusing on a particular disease, maybe I’ll have the opportunity to meet (and hear) from more Oregonians. Perhaps you’re doing ‘just fine.’ Perhaps you’d prefer to handle things yourself. Perhaps you aren’t ready to ‘accept’ the illness, concerned that seeing it makes it final. Whatever the case, MLWT has become a beacon of sorts representing a voice, not a non-profit. An idea, not a sound bite. A collective, not an exclusionary group with their eyes set more on copyright than support.
I encourage you to get to know me and MLWT a little better this month. Not as someone who knows more than you about living with health challenges, but as someone who wants to learn from you in order to do things better.
I want to boost my awareness of those with whom I share this beautiful state. Of course, I learn a great deal from others outside of Oregon and SW Washington, too, and I certainly want to keep hearing from you, too.
So, gang, here we go! Today begins a month of spotlighting not our lives with an illness as much as succeeding with health challenges that makes our lives worth being aware of.