I'm so honoured and grateful to be nominated once again for the WEGO Health Awards. Last year I was nominated for the Best In Show: Blog category, this year it's for the Best In Show: Facebook category for all my ME/CFS advocacy.
Being an advocate is hard work, especially when you have a severe chronic illness like Myalgic Encephalomyelitis. Patients are putting their own health on the line during advocacy campaigns, pushing their limits, trying to be consistent, to be heard, to be seen. They often pay for months afterwards in the form of deterioration and much pain.
Of course we do not raise awareness for personal recognition, but for the good of the community as a whole. Being recognised is still a great joy and reward. It lets patient leaders and advocates know that their efforts were seen and appreciated, especially if they have been isolated by their worsened condition in the aftermath of a busy awareness campaign. Things like this can lighten the load and lift our spirits.
What is WEGO Health All About?
WEGO Health aims to create connections between healthcare organisations and patient leaders. Acknowledging the value of a patient's experience and skills. They are the world’s largest network of health advocates and patient leaders - covering a huge range of conditions and topics. Click here to learn more about the WEGO Health Patient Leader Network.
What Are The WEGO Health Awards?
The WEGO Health Awards celebrate patients who actively support the mission of WEGO Health: to empower the patient voice.
There are 16 award categories to assure a variety of advocacy styles and services are recognised.
They are the only awards covering all conditions and platforms, that recognise and reward the thousands of incredible Patient Leaders who not only raise awareness, but also support their communities, often without recognition and at great personal cost.
My WEGO Health Award Nomination
I am incredibly grateful to whoever nominated me for this award. I was so surprised when I read that email from WEGO Health. Facebook has not been my main focus over the years, but this year, particularly during May for ME Awareness Month, it really took off and I have had so much interaction and feedback. A beautiful community is growing there now!
As a chronically ill and disabled person myself, my aim for my social media accounts has always been to share useful information, raise awareness and encourage others. This year I have expanded that aim to include empowering others to raise awareness and share their own stories.
I know how lost I felt when I was first diagnosed, trying to navigate the healthcare system that seemed to know hardly anything about my condition. I felt misunderstood and isolated. As if I might be the only one in the world with this illness.
I know how important my connection to other patients was, so I decided to do what I could to make that whole transition easier for newly diagnosed patients. We do not need to struggle alone. We are stronger together!
My ME/CFS Awareness Campaign On Facebook
I manage a few pages and support groups on Facebook and ran awareness campaigns on all of them this year, so I'm not sure which one got me nominated. I'll just link them all here so you can see what I've been doing.
Chronically Hopeful - my blog's page, I regularly share photos, personal updates, advocacy posts and blog posts on this page.
ME Awareness Pictures - this is my advocacy page. A collection of powerful ME/CFS awareness posts ready for people to share. I'm currently working with a team of volunteers who are translating awareness pictures so that people can raise awareness in their own language too.
ME/CFS Community - a public group for people with ME, CFS or PVFS. A place to hang out, share content, raise awreness and support each other.
I admin a closed support group too for those who need more privacy.
My Proudest Advocacy Achievement For 2019
My biggest advocacy achievement this year has been the Personalised Millions Missing Posters. I decided to help the community raise awareness more effectively by providing a series of personalised Millions Missing pictures they could share online and at live awareness events.
I ended up getting over 360 requests, and despite awareness month being long gone, I am still getting requests every week. You can see the entire collection here. If you'd like one too, then click here to request yours.
The Importance Of Sharing Your Story
Despite experiencing our illness very individually, there is much power in sharing our personal stories. When you share your story, you are displaying resilience and giving hope to others who might feel very alone in their struggle. Sharing your trials and errors could save somebody else the same issues or inspire them to try something new they might not have otherwise.
Sharing your story also allows healthy people to see a side of chronic illness that they might not otherwise get a glimpse of. This will help to eliminate stigma and misunderstanding. It will help to educate and inspire healthy people to action.
How You Can Support Patient Leaders
I've Been Nominated For
Endorsements are now open, which means you can vote for me and any other patient leaders and advocates you'd like to recognise.
If any of my advocacy efforts have helped you to raise awareness or feel less alone, please consider endorsing me for this award.
Click here to visit my nominee profile where you can click the orange “Endorse” button under my photo. From there you can browse the directory for others to endorse or check out the list below. We have some amazing ME advocates to support this year!
Some Great ME Advocates To Endorse
Quite a few other ME Advocates have been nominated this year, I'll list them here so you can show your support for them too. Just click the link to go to their profile, then find the orange "Endorse" button under their photo. Let's show our fellow warriors that their efforts are appreciated!
- Tom Kindlon (Research and Advocacy, Ireland)
- Jo Moss (Blogger and Advocate, Journey Through The Fog)
- Jessica Taylor-Bearman (Share A Star Charity, A Girl Behind Dark Glasses)
- Bettie Hough (Millions Missing Voice)
- Mireia Troi (Spanish Advocate)
- Paolo Maccallini (Research and Advocacy, Italy)
- dSavannah (Blogger and Avocate, dSavannah Rambles)
- Michiel Tack (Belgian Advocate)
- Joan McParland (Hope 4 ME & Fibro Northern Ireland)
- The Tiredgirl Society (Community for people with Chronic Fatigue Syndrome)
- Amy Robson Harbottle (My Illness Thoughts)
- Invest In ME Research
The WEGO Health Awards Ceremony
This year the WEGO Health winners will receive a prize pack valued at over $7,000. It includes airfare and accommodations to be a featured Patient Leader during the HLTH Conference in Las Vegas in October 2019. They also have virtual award ceremonies and features online to include all finalists in the celebrations.
I'm So Grateful For The Encouragement.
I feel like this is what I am meant to be doing with my particular skills and experience in this season of my life. Getting messages from the community telling me how grateful they are for my words and graphics and then these nominations - it is such an encouragement to me.
I am passionate about helping others with chronic illness adjust to their new normal, and raising awareness of the realities of this debilitating illness. As long as I have the ability to do so, I will continue to create content for my fellow warriors.
This community is such a blessing to me, I only hope that one day I could do even more to help others in a more practical way.
More About My Advocacy And Awards
Let's Stay In Touch
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