30 August 2011

Fundraising and Advocacy Fatigue

One of the (many many) cruel things about this disease is that fund-raising and advocacy for this illness has been largely left to the patients.

We're bedridden and might not have the energy to get up and brush our teeth, but we feel obligated to comment on an inaccurate or vilifying newspaper article. We're all struggling financially because of being unable to work and having to hire help for simple household tasks, but we scrap up a little bit to donate when there's a fund-raising event. We want hope, so we try to read scientific articles that are full of technical information that is difficult to understand, when we sometimes have brainfog so bad that we can barely read at all.

At some point, we have to remember to step back. That point will be in a different place for everyone. But we have to remember, we are patients. Our own personal health must come first.

Today I deleted the bookmark to the Vivint Gives Back project and was hit with a huge wave of relief. Don't get me wrong, I'm immensely grateful to Vivint Gives Back. But every day I had to remember to vote. Every day, 3 clicks, one to open the link, one to login, one to vote. It wasn't much. Hardly any effort at all. And yet it was a relief to be done with it.

We want to help others who are ill. We want to be advocates. We want to believe that we can write that blog post or Tweet or newspaper comment that makes someone believe us, that changes minds. We want to believe that the few pounds we can scrape up to donate will make a difference. We want to believe that we'll find something in the scientific journals that we can take to our GP and turn into a useful treatment.

And now this post is turning into something I didn't expect, as I realize something. I have been reading How to Be Sick by Toni Bernhard and tweeting some of the passages from my Kindle. And earlier I tweeted this passage. It's about how, as the Buddha said, "the origin of suffering is desire". It's the desire for things to be other than how they are that brings us suffering. And that's what we have to watch for when we engage in these advocacy activities. We must try to avoid getting so attached to them that they hurt our health and, more importantly, our mental well being. We have suffered enough.

There was another prophet who said "The poor will always be with us." He did not mean that we should not care for the poor, but that it was permissible to set that struggle aside sometimes, and care for our own physical and spiritual needs. If we need to take a break from ME/CFS advocacy for a time, the fight will still be waiting for us when we return.


  1. I'm not sick myself, but sometimes it's important just for mental health to learn to detach a little.

    This cartoon sums it up for me.

    None of this means that our efforts are worthless. Just that it's good to remember to breathe.