Advocacy Effort I Went Public About ME/CFS To Raise Awareness + Research Funding- Here's What Happened

[mr.rob]

A few months back Whitney Dafoe made a post talking about how more patients in the ME/CFS community need to "come out" and bring awareness to the world about this disease.

Whitney is a huge inspiration for me and it really got me thinking about whether I'm doing everything I can to make a difference.

So for my past birthday I gathered up what courage I could find and did just that... I went public to my following to educate them and ask for any financial help to go towards The Open Medicine Foundation.

It was an interesting reception to say the least but ultimately successful. I did an off-topic post on my blog to share how I went about it, what exactly happened, and lessons learned to hopefully inspire others to do the same!

I feel like Whitney would want me to share this.

Here is the post for anyone interested how it went: https://thefunctionalpatient.com/chronic-illness-advocacy/

 

[Issie]

I just read and watched your videos. I did especially like the last personal video. Your sincerity and beliefs in what you were trying to do and convey came through. It is unnerving to share that one has a chronic illness. But it is also a bit liberating. We all deal with things in our own way. But being truthful and honest and no longer covering over what we deal with gives one the freedom to BE. Many wont and don't understand what a day after day life is, in a body with chronic issues. (The only way they could, is if they had it themselves. And we don't wish this on anyone. So its good that less can have "empathy" (really feel deep down what we feel), but maybe there can be a little "sympathy", ( an understanding and feeling of sadness for something one goes through). One has to have experienced something to have "empathy ", but one can try to imagine another's plight to have "sympathy". That we can all do. Bringing awareness helps in a bigger understanding. It will take those to "feel" our pain somewhat for there to be awareness and for others to reach out to help.

Don't worry for those who unfriend you. There will be others with more awareness to hit a like and want to become your friend. Those are the sort of people you want to surround yourself with anyway. And don't worry, some of us have had long term relationships "despite" our illnesses. Granted it takes a special person to be able to take all that on. But we are not our illness. We CAN have a life despite it.

I've made some really nice friends along my life journey. And those who accept you for you, is who you want to keep around. If they don't KNOW the real YOU. Then you aren't being true to them or yourself. Of course how we do it, is a whole other thing. Time and place for everything. And we sure don't want to be "Debbie Downers". But this is a part of who we are. We need it to be known and accepted. We need a hand up, not a push down.

You did an excellent job of "coming out of hiding of ME/CFS". And your passion and love of music and people and genuine intention for awareness showed through as a bright light. Good job!

Issie

 

[mr.rob]

Hey Issie, thanks for the kind words!

Yeah I couldn't have said it better myself. Life with illness is possible... just takes a little more creativity, compassion, and patience

Hope you are as well as you can be.

 

[LA2SD]

A few months back Whitney Dafoe made a post talking about how more patients in the ME/CFS community need to "come out" and bring awareness to the world about this disease.

Whitney is a huge inspiration for me and it really got me thinking about whether I'm doing everything I can to make a difference.

So for my past birthday I gathered up what courage I could find and did just that... I went public to my following to educate them and ask for any financial help to go towards The Open Medicine Foundation.

It was an interesting reception to say the least but ultimately successful. I did an off-topic post on my blog to share how I went about it, what exactly happened, and lessons learned to hopefully inspire others to do the same!

I feel like Whitney would want me to share this.

Here is the post for anyone interested how it went: https://thefunctionalpatient.com/chronic-illness-advocacy/

Good for you, mr. rob! I will check it out...