I’m so grateful and humbled to be nominated for another WEGO Health Award. This is the third year in a row which is just incredible to me. This year I’ve been nominated in the Advocating For Another category. In previous years I was nominated for my blog and for my Facebook advocacy, As patient advocates, just knowing that our efforts are recognised and appreciated is a big deal. 

If you’d like to support my nomination, please endorse (vote for) me below. It takes less than a minute to do. Thank you!

Life As A Patient And Advocate

It’s hard work being an advocate, especially when you have a severe chronic illness like Myalgic Encephalomyelitis which makes using any device with a screen painful and exhausting as does the constant onslaught of fluctuating symptoms including cognitive dysfunction. Advocates often put their own health on the line during advocacy campaigns, pushing their limits while trying to be consistent and effective.

ME advocates often pay, in the form of deterioration and much pain, for months after a campaign. I personally spent the rest of 2019 in bed after the Millions Missing Posters campaign in May. Although we are doing this for the good of the community as a whole, being recognised is still rewarding and encouraging. 

What is WEGO Health All About?

WEGO Health is the world’s largest network of patient leaders and health advocates encompassing a huge range of conditions and topics. They aim to create connections between patient leaders and healthcare organisations. WEGO Health acknowledges the value of the patient’s experience and their skills. 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 have the same mission as WEGO Health: to empower the patient voice.

There are 16 award categories to include a variety of advocacy styles and services.

They are the only awards that recognise and reward the thousands of incredible Patient Leaders, accross all conditions and platforms, who raise awareness and support their communities, often at great personal cost and usually without recognition.

My WEGO Health Award Nomination

I am so very grateful to the person or people who nominated me for this award. I was really not expecting a nomination this year since I had not been very active online due to ill health. I only shared a few graphics during awareness month and have shared regular updates on my own journey, but one set of graphics did get a hugely positive response which just blew my mind.

As a chronically ill person, my aim has always been to raise awareness and encourage others. I also want to empower them to raise awareness and share their own stories.

I know how lost and alone one can feel when trying to navigate a healthcare system that doesn’t seem to know anything about your condition. You can feel misunderstood and isolated. As if you might be the only one in the world with those issues. So, by creating these online communities, we can share our stories and let others know they do not need to struggle alone. We are strong together!

The Reason I Was Nominated

The person (anonymous) who nominated me wrote “Char works so hard for other ME Patients, even to the detriment of her own health”. So I’ll link all my relevant profiles here and you can see what I’ve been doing online, apart from running ChronicallyHopeful.com:

Chronically Hopeful on Facebook, Instagram and Twitter – these are my blog’s pages where I share photos, personal updates, advocacy posts and blog posts.

ME Awareness Pictures on Facebook, Instagram and Twitter – this is my dedicated advocacy page. A collection of powerful ME/CFS awareness posts ready for people to share. This page doesn’t only contain my own graphics, but any powerful graphics I find within our community. I’m also 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 – this is a public group on Facebook for people with ME, CFS or PVFS and their carers. A place to share information, raise awreness, ask questions and support each other.

I also admin a closed support group for those who need more privacy.

My Proudest Advocacy Achievement In The Past Year

My proudest advocacy achievement this year has definitely been the About M.E set of graphics I created. This set was originally created in November 2019 as an introduction to M.E. on my Instagram story highlights, just so that anybody who landed on my profile could get a quick overview of the condition if they didn’t know what M.E. stood for.

It got such a positive response from my Instagram followers, that I created a shareable version for all platforms. The response just blew me away. So many messages thanking me for the clear and simple explanation and then the sharing began… the original post has now had over 62 700 views. So unexpected!

The Importance Of Sharing Our Stories

Something else I am really proud of is being able to help others. I get messages every week from people thanking me for sharing my story as it has helped them in some way. I would not have thought when I started out that I could help so many people by simply sharing my experience. This is why I encourage others to share theirs and try to create graphics that can help them do just that. 

Even though we experience our illness quite uniquely, there is power in sharing our personal stories. When we share our story, we give hope and show understanding to others who might feel alone in their struggle. Sharing our victories and even our trials could inspire others to try something new or save them from making smimilar mistakes. It helps people make informed decisions about their own health.

Also, by sharing our stories, we show healthy people a side of chronic illness that they might not get to see otherwise. This helps to eliminate stigma and misinformation. It helps educate and move healthy people to action. And we need all the healthy allies we can get!

How You Can Support Patient Leaders

Endorsements are now open, which means you can vote for me and any other patient leaders and advocates whose efforts you’d like to recognise.

If any of my content has 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 “Endorse” button under my nomination. 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

Below are some other ME Advocates who have been nominated this year, please show your support for them too. Just click the link to go to their profile, then find the “Endorse” button (or thumbs up) under their nomination. Let’s show our fellow warriors that their efforts are appreciated!

• dSavannah (Blogger and Advocate, dSavannah Rambles)
• Tom Kindlon (Research and Advocacy, Ireland)
• Jo Moss (Blogger and Advocate, Journey Through The Fog)
• Mireia Troi (Spanish Advocate)
• The Tiredgirl Society (Community for people with Chronic Fatigue Syndrome)

The WEGO Health Awards Ceremony

This year, due to COVID-19, there won’t be a live awards ceremony, but there will be a virtual ceremony to celebrate the finalists and keep everybody safe. Prizes include:

• $500 cash prize to be used towards advocacy efforts or travel 
• Compensated WEGO Health 2021 Patient Leader Advisory Board Seat (estimated cash value $1500)
• Feature as a worlds’ top patient expert in HLTH’s patient-centered webinar series, as well as industry exposure opportunities throughout the year* *Winners will have priority for speaking engagement and industry exposure events throughout 2021, depending on the state of COVID-19. 

Grateful For The Recognition

I find joy in helping others with chronic illness adjust to their new normal or find the information and resources they need. I also enjoy creating impactful graphics that help others raise awareness of the realities of this debilitating illness, but I am not always able to keep up with it due to the fluctuating nature of my condition.

So I am very grateful to whoever nominated me this year. As advocates and patients we often feel guilty when we are unable to be as consistent as we had hoped. It is lovely to know that even if we cannot function at full capacity, our efforts are seen and appreciated.

This community is such a blessing to me, I hope that one day I’ll be able to do even more to help in a practical way.

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