The alchemy of turning frustration into power

Share on facebook
Share on twitter
Share on email

A while ago, an inspiring story ran about a researcher who, every time she was harassed online, redirected her feelings into something more positive and enduring by taking some time to create a new Wikipedia page for an accomplished woman in science who didn’t already have a page.
It reminded me of the ME/CFS patient community. As patients, we’re often justifiably frustrated at attacks we’re subjected to or situations that arise that we feel that we cannot control. But how can we redirect that into something that moves us forward, instead of risking it dragging us down and making us lose sight of our goals for better treatment?
Can we turn that frustration into the power to build something enduring?
I realized that each time there was an attack on the patient community, or when another bad piece of press or research appeared, I’d feel furious at the apparent injustice, but at a loss what to do. I started to say to myself, “I can’t fix that, but what can I do?” — and not just in that moment, but for the long term, to help build something valuable.
As a result I became one of the early MEpedia contributors. Instead of getting angry and feeling powerless in the face of events outside of my control, I seized control by opening a page on MEpedia  and clicking “edit” to make the page better in some small way, for the benefit of patients, doctors, researchers, carers, family and journalists who would read it in the future.
My intent was to take the knowledge and perspective I have, and share it. If others do the same, we can create a goldmine of knowledge that does not exist anywhere else.
Initially I had little idea what I was doing and made mistakes, but none mattered and I quickly became confident that although there were many pages I couldn’t usefully improve, there were many I could, and I focused on them.
I created a page for a doctor I knew a little about, I added his website, Twitter and Facebook links, and linked to his Wikipedia page. Later I added a photo, and an interview with the doctor that I saw on YouTube. Then another day, I saw someone mention a study on Twitter about B cells: I don’t know anything much about B cells but I knew there was a page on MEpedia about them, and the study wasn’t listed, so I added it. I noticed there was no link to the Wikipedia page for B cells, so I added that too. Later I added some other studies I found with a quick search on PubMed.
Every time I make an edit like this, I move the page, and the MEpedia project, forward just a little bit, which felt very satisfying.
The improvements are cumulative, made up of tiny steps, and although it’s pleasing to see them combine to show substantial progress, what’s even better is to then see others (who have a different perspective and knowledge) spontaneously edit the page afterwards and make further small improvements that either correct mistakes I made or add extra useful information.
It is collaboration without coordination. The wiki system allows patients to work together without the normal baggage such as plans, managers, hierarchies, defined roles, meetings and commitments that is normally required. All I have to do to edit a page is click the “edit” button!
So when we feel down, or angry, or frustrated or powerless, let’s refocus a little of our precious energy to move our community forward towards better research, understanding and treatment. Let’s collate all the best resources from our community — the studies, the blogs, the articles, the doctors, the researchers, the patient groups, the healthcare and political situation in each country.
Let’s build resources to help carers care, to help doctors treat, to help new researchers get up to speed, and help journalists write more informed articles. With MEpedia you can dip in and out on your own schedule.
Please take a few minutes a week to look at the “Recent changes” page on MEpedia , or click to see a random page, and read it and improve it with even just a sentence, a typo correction or by adding a link. If you see a new study, article, blog interview or something notable on social media, forums, or here on #MEAction in the news, check whether it’s in MEpedia already: if not, add it! There’s also a priority list where you can see what particularly needs doing.
Over time, editing will get easier and you can do more. It is probably much easier than you think, so open a page and click “edit” today!
MEpedia is fast becoming a valuable resource, with more contributors joining the project and more visitors reading its pages, but we need your help. Our strength is in our numbers — there are large numbers of ME patients, so each of us contributing a little means collectively we can achieve a lot. Together we are stronger. The more we are each able to contribute (within our limits) the sooner we will see change.
Next time you feel exasperated at some attack on patients or event outside your control, please open MEpedia, hit “edit” and use that magical alchemy to convert that energy into something positive that will benefit our community for years to come.
Please follow MEpedia on Twitter and Facebook. To get help with editing articles, join the MEpedia contributor forum. You’ll be very welcome!

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

2 thoughts on “ The alchemy of turning frustration into power”

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

NHS England omits advice to apply clinical judgement re vaccine

It has come to light that a letter from NHS England and NHS Improvement to all vaccination centres and GPs in the UK has omitted advice that health professionals can and should apply their clinical judgement when placing people in group 6. Vaccination of people with underlying health conditions that put them at risk of

Read More »
Waiting for Superman Book on table

Waiting for Superman – UK Book Giveaway and Review

Do you want to win a free copy of Waiting for Superman? We have three copies to give away to people in the UK!  To enter, all you have to do is follow #MEAction UK on Instagram, like and comment on this post. The deadline is 9am (GMT) Monday 8th March! Win a copy! Thank

Read More »
#MEAction activists outside Scottish Parliament

Scottish Election! Ask your MSPs to support people with ME

If you live in Scotland, please join our campaign to ask your MSPs to pledge their support for people with ME. Email your MSPs The Holyrood elections are coming up on 6 May 2021 and we want to make sure that MSPs are aware of ME and the desperate need for support. There are more

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top