May is National Lupus Awareness Month, which means we will be hearing a great deal from the organizations, foundations and associations encouraging us to help educate our communities. Although opening up about our health is something we have to decide individually, we need to keep in mind the ‘lupus’ message we send out when presenting our own lack of concern for each other.
The new awareness campaign, “Could I Have Lupus?” offers a great chance to introduce the disease and, in particular, those individuals of color who are affected at higher rates with treatment discrepancies. However, it still presents lupus in a limited fashion. There are no men. There are no teens. There are no employers speaking of the high costs of having employees with lupus. They don’t offer physicians speaking about their frustrations in not having time, medication or answers for their patients. They don’t discuss the financial choices – to work, to go on disability, to choose between meds and food. The campaign is something and I know I’m grateful to them for their effort, but there is so much more that needs to be said. No campaign of any sort will completely cover something as individualistic as lupus, which is why we need to add our personalities to the dialogue. The aim of this invitation is to focus on the key to any awareness effort - to make your ’cause’ mean something to those around you. Hopefully, through your words and within all the various pieces you contribute, someone out there – whether they are ill or not – will find something relevant to their own life. That is our ultimate goal.
This month, we are calling for guest bloggers to bring to all of us their own perspective on ”What lupus means to me…” that will be posted during the entire month of May.
We are keeping the theme as general as possible in order to invite those details that we all feel are uniquely our own – be it our independence, our ability to cope just fine, our isolation, our difficult choices, and so on. Whether you have it yourself, live or work with someone who has it, or even have patients and clients with it. Your contributions can be anonymous if you feel better in doing so, however, we ask that your piece honor the intent of this event by writing it:
To provide readers insight into what having lupus is like for you that will accurately and respectfully educate or inform the general public
To offer suggestions, tips and tools to patients and caregivers that will assist them in living well with lupus
To encourage those with lupus to see themselves as a part of a community that is as dynamic and individual as lupus is itself
To promote the efforts of individuals, organizations, associations and foundations toward strengthening the goal in developing treatment options and positive support to those living with lupus
Due to space, we ask that your submissions be
to us by April 25th
no more than 650 words, and
in a Word document attachment to the email address mylifeworkstoday@gmail.com. (Please put “May Lupus 2009“ in the subject line)
If you don’t blog or use the internet, or have difficulty writing due to pain, you are invited to mail your pieces in to our address listed on the blog’s contact page and it will get put together for you. (It will be posted only after you have the final review). If you have any questions or concerns, either comment here or email me directly. This event announcement is also explained on our bulletin boards in the Welcome to MLWT – Announcements forum.
We are hoping that those of you here in the Pacific NW (or know someone with lupus living here), will join in. We recognize that May is also National Fibromyalgia Month and that both of these illnesses go hand-in-hand. Therefore, our blog is open to anyone living with illnesses that include lupus-like symptoms and who may be facing a diagnosis for it as well. We know how difficult getting clarity in our health can be and receiving a diagnosis for autoimmune illnesses can sometimes be emotionally brutal. Yet, we still move forward and that is the celebration we want to express here during May’s awareness efforts.
The rest of the country has a much stronger voice out there leaving us here locally to go along without contributing our own take on things. I, personally, can speak for myself… how about you ?
We look forward to hearing all that you would like to say~
