May is ME (Myalgic Encephalomyelitis) awareness month and last year after conducting an Instagram poll 90% answered yes to an awareness Instagram challenge! From that I created the #meandmyME photo a day challenge themed around M.E and sharing our individual stories of life with this illness. It was so well received and after feedback from it last year it’s back! Check out the questions I get asked most about it below and if you have any others just ask on Instagram.
It’s simple to take part, for everyday day in the month of May you create a post all about your interpretation of the prompt when it comes to life with ME/CFS or your illness/disability (there’s no right or wrong way to interpret, if anything this is the most fun part!). On April 20th the prompts will be released on our Instagram page so you can get planning or thinking ahead for your posts.
The most important aspect is that collectively we all use the hashtag:
so I can see your posts and we can find each other helping build community along the way, as well as sharing our stories. Feel free to tag me (@spoonie_village) in the images too, one of the best things last year was getting to know you all a bit better by learning about your story. You can post photos/videos/art/quotes on your grids or you can use your stories, it really doesn’t matter how you want to take part, your illness stories are personal and so are the ways you choose to express them!
The purpose of the challenge has two main goals. 1) Raise awareness on social media and get our stories out there 2) Build community and bring people in similar situations together to know they are not alone in what they are going through.
I know there are so many ways we can raise awareness for illnesses. Yes we need governments to pay attention, we have excellent charities advocating on our behalf and if well enough we can attend events aimed at raising awareness. However, this challenge came about because I understand life being bedbound and feeling like no one knows your out there struggling with this illness. We are easily silenced and having little energy means we can struggle to be part of those more conventional ways. I agree we shouldn’t have to do it all ourselves either but things are slowly changing. Even since last year so much has happened in terms of awareness. News outlets now heavily look towards Social media for stories and news when it comes to awareness days/months. How many news stories have you read where they post the responses of people on social media to events. Yes, there’s the ones about outrage when a soap character dies or about what some celebrity is wearing but, there’s also a more important role it has to play. This is why social media is a great tool that can raise awareness and be a platform for those typically silenced or invisible to be seen and their voice heard, it has the power to create impact in the world.
One of the biggest problems people with invisible illnesses face the ignorance of people who don’t know about them. Rather than bemoan or belittle people for not understanding what we face or deal with let’s educate where we can, using what we have available to us and raise awareness through sharing our stories. We are all human, with or without illness let’s connect on that level first. This challenge provides everyone taking part to share an aspect of their life with people which they may never have shared before or which has been understood by others before, this can spark conversation, provide space for learning and create a deeper level of understanding. Yes, things like this take a bit more energy and time but imagine this, there are 31 prompts if just a 1000 of the people following me people posted 15/31 them in that month, that’s 15,000 stories told and 15000 chances to connect with someone who follows you about what life is really like with this illness. It doesn’t stop there though. Imagine, you create your post in May but someone in December who has just been newly diagnosed comes across your post when searching through tags and realises they are not alone in this, they too are now learning to cope but they’ve stumbled across more information and more support than they realised was out there. Which brings me to my second part, community.
Illness is isolating. There’s no escaping that. Your life changes, what was once so important changes. Your goals change. Friends can lose sympathy quickly, family might not fully understand at first and finally the most harshest of realities is, Doctors or people you expected to understand and support you often close doors in your face or have no answers. You’re left to cope and muddle through. I wish it were different and hope it will be one day soon but majority of the time you’re alone and can feel cut off from the world we live in. Social media has a role to play in changing that. From your bed you can tap in access a community of people who are going through very similar things and are here to cheer you on, offer support and encourage you to keep on going. It’s amazing that in a few minutes we can access people globally who understand, care and become part of your life. Just because these people exist on the internet doesn’t mean their friendship and love counts for any less. We are here despite all we go through and we need to connect. A simple hashtag might not sound like much, but the minute someone who has felt alone and cut off finds it they are tapping into all of you who share your stories, offer support but most importantly ‘get it’. Be social, comment on people’s posts. Offer kinds words. It was through the challenge last year I made friends with so many of you and went on to develop closer friendships via DMs and continued conversation. We are more than our illness too. Find people to laugh with, to cry with but most importantly lets create a place of comfort full of love and support. Sure, the internet gets a bad reputation often and sometimes rightly so, but when used with love it is such a positive force we can all be part of! Community gets us through living with illness. We need it in order to feel connected to the world and through sharing our stories with one another we can. That’s the point of this challenge.
Yes. I have primarily focused on the name M.E but the challenge is still for you if you call it CFS, that’s fine too! I have one Dr who refers to my illness as M.E. the other CFS so I really don’t mind which you use, it’s just M.E was more fitting for the hashtag.
Simple answer yes! I received a lot of feedback last year both during and after the challenge about how May also has other awareness purposes and people wanted it to be open to them, I do hear you. Last year I did explain it’s not there to exclude anyone however the reason I set it up is simply because I can only share my story of life with ME/CFS because that’s the illness I have. Last year it was created with that purpose as I felt passionately (and still do) about the lack of awareness of how it affects people and that it is essentially a spectrum illness. It started out as a list of prompts for myself to stick too during the month so I could focus my own awareness posts, then others said they would like them too.
From your feedback I considered heavily this year about opening it up as a general awareness photo challenge and from the poll not long ago, which has pretty even results in the end, and your messages I felt I still needed to stick with ME/CFS and provide the option like last year for anyone to take part. I heavily considered options of two prompt page images or scrapping the ME/CFS title but in the end I felt I needed to keep it simple for my own health too. Also some of you passionately messaged about how you wanted it kept for M.E and I considered this too and felt I agreed. Spoonie Village is a community for illness and there’s no reason you can’t join in, at the same time I felt making something so wide took something away from the core of why I created it. I will never be able to please everyone and at the same time I can’t provide everything tailored to thousands of people’s wants either. I speak from my experiences and set this account up with that purpose so felt I’d be denying myself of my original roots if I didn’t focus on my illness this month. Some people have ME/CFS along with other illness, some people have just ME/CFS and some people have a totally separate health issue and either way it is still open to anyone who wants to join in.
This year to encompass this more I have changed the hashtag to #chronicillnessandME so it’s there for all chronic illnesses, it references M.E too but also takes it back to everyone sharing our stories. The prompts I’d created for this year are fairly neutral to all health conditions and where I have wrote ME/CFS (on about 3 of them) there a * to explain simply swap the wording to your illness/disability. While I will post about my experiences the point is you share yours too and that comes in many shapes and sizes so feel free to join in whether it’s another condition you’re trying to raise awareness of, it’s just I will continue to focus on ME/CFS because that’s my health condition.
No. It took me years to get a formal diagnosis because it’s a process of elimination and in my opinion Drs are reluctant to give a diagnosis early on because they know if they do there still isn’t anything they can really do to help. My opinion on this challenge and diagnosis is this: You live in your body 100% of the time, no one else does and if you’ve felt this way for a while and you’re going through the process of getting a diagnosis then by all means join in. It adds to the awareness of a major issue people face which is getting a diagnosis despite all the tests coming back okay and the Dr telling you nothing seems wrong, despite your life and energy levels have changing massively. The challenge is also open to people who don’t have the illness but care or know someone with is and want to join in with the raising awareness side of things too. There really are no rules about who is eligible, just a request for treat it genuinely and take part by sharing your own experiences.
Please don’t worry! I get it, it’s difficult and requires energy! I prepare as much as I can in advance but know I too will struggle some days. It’s normal and it’s okay. We aren’t here to tell you to stick to the days and never miss one! It’s not compulsory and honestly doesn’t matter if you miss some. Do what feels right for you and your health. It’s all about taking part and raising some awareness about your story living. Everyone is different with this illness and it’s all about showing your version and connecting with the community.
That’s most of the questions I get about the challenge, but if you have more then head to Instagram and ask me!
All you have to do now is keep an eye out for the prompts on the 20th April and remember the #chronicillnessandME Don’t forget sharing the prompts on your account whether it’s in stories or on your grid helps massively when it comes to raising awareness, as the more people who know about it the most potential we have at reaching more people with our stories! So once they are released feel free to share and spread the word.
I really can’t wait to see all your creativity and posts throughout May, and to get to know you all more! Let’s get ready to do this!