By Deanna Couras Goodson
Reprinted with permission of the author
May 12th was International Fibromyalgia, Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (ME) Awareness Day.
FMS/CFS/ME are real conditions, although many people don’t recognize them as such. They impact the quality of our lives. Many of us have lost jobs, homes, income, friends, self-respect and much more because of our diseases. When we try to ask for help which isn’t easy for us, doors are often slammed in our faces. We are treated as ‘hypochondriacs’, ‘nuisances’ or worse. I for one am sick and tired of being “sick and tired”. Let’s work to find a definition and eventually a cure!
That requires that each of us take action. I know that with our limited energy reserves that can be hard, but it’s oh-so-necessary. We don’t have to be ashamed because we’re sick. We don’t have to cower in fear of what others will think of us and about us. We know our reality and it’s time that we share it. Let’s shout from the rooftops.
I have ______________ and I’m NOT going to take it anymore!
Here are ten things you can do to raise awareness today and every day. Please try to do one today and at least one every week for the next year! I will!
1) Tell someone about your illness. Yup. Sounds simple, but it can be oh-so-scary. Tell someone you don’t know or maybe a friend you haven’t talked to in a while. Just tell them what it’s like to be you for a day and how this illness has impacted you. Sure, they may look at you funny. So what? That’s their problem.
2) Join a support group. Either online or in person. Join a support group and get yourself among other people who understand you.
3) Educate yourself about your illness. I get emails from people every day. Many of you are very aware of the research and information out there. I applaud you. Some of you are not. Please read books, get on the internet – despite what your doctors may say – and learn as much as you can not just about your illness but about your own body’s reactions. Listen to your body and give it what it needs. That is the difference between existence and ‘survival’ with this illness. You can survive even if you aren’t CURED.
4) Support a Fibromyalgia/Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Nonprofit Organization on the web. Send them an email, donate, and buy a product, whatever. Help these organizations stay afloat and remind them to keep lobbying Congress, local, state and national representatives and the media on your behalf. We just need to acknowledge the work of these individuals and organizations and help them do it. Together we can accomplish what is virtually impossible to do alone.
5) Purchase a copy of the Faces of Fibro e-book or another “Invisible”-illness inspired piece of literature. Yes, I’ll put in a shameless plug for my e-book. I’m proud of it. It’s both poignant and inspirational. Your purchase allows me to help support other organizations and to continue being present in the Fibro/CFS/ME community.
To place your order, copy and paste this link into your web browser:
7) Post messages to forums, message boards and listservs that relate directly or indirectly to invisible disability issues. Please remind others to speak out and speak up. C’mon all the cool kids are doing it (wink). Seriously, your willingness to talk about the issues surrounding the lack of understanding, the lack of a diagnostics, a definition of many of these conditions and a cure – will remind others that what’s going on is wrong and may encourage them to do something too!
8) Frequent web sites, sign up for newsletters and devote time to reading the info. The web is still the best place for information regarding our illnesses. Ask questions, research, read and more. If I said it before, oh well. Just do it twice.
9) Wear an Awareness bracelet or ribbon – WITH PRIDE. The National Fibromyalgia Research Association has developed one for Fibromyalgia. It’s available at http://www.nfra.net/AwareBracelet.htm. There is also a Fibro Awareness Ribbon which you can look over at http://www.nfra.net/AwarePin.htm.
BRAME is an organization in the United Kingdom. The acronym stands for Blue Ribbon for the Awareness of ME (Myalgic Encephalomyelitis). ME is the international term for Chronic Fatigue Syndrome. To learn more about BRAME’s Awareness Ribbon, visit http://www.brame.org.
10) Don’t stop after May 12th! Awareness activities are not reserved for just one day. If you stop, people will forget – and we can’t allow that anymore!
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