6 Ways to Raise Awareness of ME/CFS When You Have Limited Energy

With it being May, and therefore Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness month, I felt inspired to write a post about simple ways in which we can help to create awareness of this illness — even when we have limited energy. Sometimes we feel we have to do something big to make a difference, which can make us feel overwhelmed and discourage us from doing anything at all. However, I figure that it all helps no matter how small it may seem — even if you can get one more person to know about your condition (and maybe even understand it a little) that’s a big achievement!

More than anything I wish people had a better understanding of how we feel and what we’re going through. It’s unbelievably tough living with a chronic illness that is not only invisible a lot of the time, but also so poorly understood. So often we are going through hell on the inside yet we look well on the outside, and so people are completely unaware of our inner turmoil.

It’s four years this month since I first became ill with ME/CFS following a nasty virus. Part of me can’t believe it’s been so long, yet another part feels like it’s almost becoming a distant memory of what it was like to live a “normal” life (I know many people have suffered for much much longer and so I know this must feel much worse for them). However, it’s taken me until the beginning of this year to have the courage and confidence to start speaking out about it more. I hate to admit it but I think a part of me felt ashamed that I was living with a chronic illness, and almost like I was a shadow of my former self. As someone who was always so health-conscious, never off sick from work, loved to exercise and eat healthily, I found it hard to accept that I was now someone who had a chronic illness. Before, I was Emma the personal trainer, Emma who did well at work, Emma who loved traveling, Emma who loved keeping fit, Emma who enjoyed socializing, etc. We have to try so hard not to let our illness define who we are. I’m getting there but it’s not easy!

I also felt as though people (family, friends, folk in general) were thinking I should be better by now, and I would find it so hard to explain this illness and how it makes me feel — I still do! Sometimes I used to wish I had an illness that people understood better as at least then I may get a bit more empathy!

Anyway, this has all driven me to change my outlook and try to do my bit to create awareness of ME/CFS! Here are some simple ways I think we can do this.

1. Telling people about your illness

I never used to speak to people I didn’t know about my illness as I didn’t want to draw attention to it and I found it easier just to try and fit in as best I could. However, over the last few months I have changed my approach and started talking to more people and telling them I have ME/CFS — sometimes with surprising responses! I know many of us don’t get out and about much, but when you do get the opportunity and start up a conversation with someone, don’t be afraid to tell them! I’m not talking about preaching to everyone you meet (this would be annoying!) but if it’s appropriate, do talk about it. When I’ve made it to my restorative yoga classes, reiki clinics, and parent and toddler groups, I’ve recently had some really good conversations with people about it! Even in the library I had a nice chat with someone! It’s surprised me the number of people who say they know someone with ME/CFS and so have understood a little about it.

Yes, I’ve had some people who have just looked at me and not really known what to say but that’s fair enough! I don’t expect everyone to be interested but at least I feel I’ve been true to myself when people have asked me questions like what do I do for a job or am I having another baby for example! Someone said to me the other day, “I’m sorry but I don’t know what that is,” so it gave me the perfect opportunity to explain! I’m not talking about ‘War & Peace,’ just a couple of sentences about the illness can give people an insight and therefore create awareness! I’ve even met a couple of people who have also had ME/CFS just through talking about it, and this has been invaluable to chat to someone who really “gets” it.

2. Explaining more to family and friends what it’s like to live with ME/CFS

This is a tough one for me. Apart from my husband who sees me every day, I think that other people in my family and people who were once close friends, struggle to understand the illness. As well as my husband, my sister also makes a huge effort to understand and is always reading up on it and asking me how I am — this means the world to me. However, even she says it’s impossible for her to really get what it’s like without going through it herself. So that made me think that I need to take more responsibility to explain more about how I’m feeling and what I’m going through.

I recently met up with an old friend who I’d lost touch with since being ill, and rather than continue to feel upset (and maybe even slightly bitter about it if I’m honest), I decided to explain! As you know it’s not an easy condition to explain but I did my best and it’s actually made a difference! I felt better for getting my feelings out there and since we met up she’s sent me some thoughtful and understanding messages to see how things are. Small things like that make a big difference when you have a chronic illness.

3. Using social media to create awareness and increase understanding

This can be fairly easy for most of us to do (as long as we pace ourselves!), especially as we can do it from our beds or sofas. Soon after I first became ill I actually deleted my Facebook account and came off social media altogether. I found it too exhausting checking in with it in those early days, and I also found it brought some much needed peace to my life to be away from all the “hype” that it seems to bring! However, at the beginning of this year I set up my Twitter account @Not_Just_Tired as I felt passionate about creating awareness of ME/CFS, and sharing things that I am learning about the illness to try and live well with it. Also connecting with others who have the same or similar conditions is so helpful. When you read something and you think “yes, I feel that too” it makes such a big difference to know you are not alone. I love #MEawarenesshour which is every Wednesday 8 – 9 p.m. (UK), 21 – 22 CEST, 3 – 4 p.m. EST (USA), where people tweet about ME. I also recently set up my Facebook page “Not Just Tired,” which is in the early stages and work in progress (as I find my way around Facebook again!) but hopefully it will help a little to spread the message. Of course there’s Instagram and Pinterest too which I know many people use.

4. Blogging about ME/CFS to create awareness

This obviously takes a bit more energy and is not quite as straightforward as the ideas above, but still it can be relatively easy these days to start a blog (if I can do it anyone can!). It can also feel quite therapeutic to write down your thoughts! I set up my blog notjusttired.com at the beginning of this year to try and help create awareness of what it’s like to live with ME/CFS. I’m enjoying sharing my thoughts and ideas, and hopefully it may help someone else who is living with this illness. I also love reading other people’s blogs about living with chronic illnesses and learning new things. So if blogging is not for you, simply sharing other people’s blogs and blog posts will help to get the word out!

5. Fundraising for ME/CFS

Maybe you could take part in an event to help raise money for one of the ME/CFS charities and raise awareness, or even support a loved one/friend if this is not something you’d be up to doing yourself. Maybe even holding a coffee morning and sharing this on social media could get people talking about it! I’ve arranged to meet the two people I’ve met locally, who have also had ME/CFS, on ME Awareness day (Friday, May 12) for a coffee! If nothing else it will be lovely to have a chat with people who understand!

6. Supp0rting events like #MillionsMissing

This is a movement to raise awareness for ME by highlighting the number of people missing from their lives because of this illness. On May 12th, 2017, protests will be carried out in 13 cities in seven countries to demand change and ask for increased government funding for research, clinical trials, medical education and public awareness. You can take part by attending one of these, or if you’re unable to attend in person you can take part virtually by sharing a picture of your shoes and posting it on social media with the hashtag #MillionsMissing. You can find out more here.

So not just for the month of May, but for the rest of 2017 and beyond, let’s all do our little bit to help raise awareness of this debilitating illness. This list is designed to be added to so please do add your ideas in the comments below! I would love to hear them!

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Thinkstock photo by artant