Millions Silenced 1 Voice

 

I’m delighted to be working with two amazing charities in order to raise awareness for Chronic Fatigue Syndrome, I’ve lived with M.E./CFS for the last two years and in those two years I’ve come to realize how little education there is on the illness. There is still a stigma around it and I want to continue to raise awareness for a topic that has impacted my life so much and will continue to do so along; I’m lucky, that I work and can live a life that some would consider as normal however social media and those who do not know me, will not be aware that M.E./CFS impacts my activity in what I can and can’t do anymore. So, I want to use the ME Awareness Week to educate those around me, from colleagues, family members and friends.

In the UK over 250,000 people are affected by ME/CFS which accounts for the 17 million affected Worldwide. As you know, I am one of the 250,000 in the UK and since my diagnosis in 2017, I’ve had the opportunity to use my platform as a writer to be able to share my experiences with the illness from; treatment, medication and managing with the illness. I’ve always said, from the very early days, that I’m in a fortunate position that I can still work with an illness, live a relatively normal life in relation to the other 250,000 suffers. I’m not cured as much as some would think, I go to the gym yes, but the workouts I would have done back in 2016 are no longer a class I can participate in. Pacing has definitely become my form of treatment. (Quote from me from, Action for ME).

I wanted to write todays post, because after it was announced, I would be working with the ME charities over the course of May for raising awareness for ME Association Week, I noticed that I was receiving my first piece of hate, or criticism or the charity I was working with and I’ll leave those comments below for reference. I’m not one to write statements because I’m not famous to ever need to write a statement but I wanted to get a few things off my chest having spent time with a friend who said that it was unfair and I wasn’t being unjust in my feelings. I’ve always made it my mission that when I write any material on the subject – I write a disclaimer about how, I’m in a luckier position than the other people with ME. There are several thousands who are incapable of doing anything such as washing their hair, showering or leaving their bed due to the agonising fatigue so I count my lucky stars that this is not my life. However, the hate received implied that I was now cured and only had ME/CFS for 6 months, this not the case. I still have symptoms and the darkest days such as; relying heavily on my B12 injections, nerve pain, sciatica, nausea, hot flushes insomnia and of course the agonising fatigue which I don’t honestly feel anyone who hasn’t got chronic fatigue can imagine. Yes I work but that does not mean these symptoms are not there or happening on a daily basis.

She’s had ME for two years and is already back at work!! Doesn’t sound truly representative of the people I know and love with ME. So many others far more able to paint a real picture

Right Sue*, its Ev not She and secondly it’s also not ‘HAD’, it’s ‘has’ read the article properly. ME affects thousands and there are several severities, for example- you have the mild, moderate and severe. I would put myself into the middle between mild and moderate because I’ve had to make changes and I still have to adapt my life to the symptoms and illness. Secondly, when I returned to work because I looked ‘ok’ nobody believed my suffering, they were not understanding of the invisible illness. By only depicting the severe cases, we don’t recognise the other sufferers who perhaps have no other choice but to carry on and work and this is where I use my platform to reveal this. Let me put it to you, this way, there have been times where I’ve no choice but to go to work. I might not be in the position that other sufferers are in and I’m forever grateful for this, but the point I’m trying to say, is just because we are at different ends of the spectrum doesn’t mean we don’t have the same issues and stories to share. Example, Kylie Minogue had breast cancer but she still remains a powerful force for the cancer survival community and charities because she shows that treatment and finding the cancer earlier is how we save lives. The unfortunate aspect with illness is, that it affects us at different stages and with that we are no always going to reveal the darkest times. As I’ve always said, the imagery you see on here and social media are the good times, the days where I’ve got half a tonne of concealer under my eyes and a bit of bronzer to perk me up. The other half, you don’t see and will not see but this does not mean I’m not suffering, they may be at a different point- but illness is a journey and one where we’re all at different pathways. This is ignorant like the issue we have as a society with invisible illness because unless you look sick, you can’t be sick. It feels that within this community of suffering, we’re needing to justify it and prove to the world we’re poorly rather than revelling in those good times when we’re out with our friends when we’re shopping and when we’re just awake all day without a nap. I want to share these times because, I’m always aware that this doesn’t always last and I do believe, that with ME and with life to be honest, you have to live life to the maximum because without living life like that you’ll live with regret. Nobody should live with regret. If tomorrow, I had a relapse which saw me being unable to leave my house again, or unable to work/walk I’d regret every time I passed the opportunity up of doing something whilst I was well enough to do it.

Very Un-Representative of ME for ME awareness week

This one was pure ignorant, because it goes with the point above that if you don’t depict to the world that you have an illness or look like a patient with ME, then unfortunately you cannot be sick or have illness. It’s like my previous post with the concept of if, you return to the office with a cast, on crutches or with your arm in a sling- you’re unwell and suffering if you don’t have these things then you are right as rain, to the untrained eye. I think, as a society we are uneducated when it comes to ME because it’s not visible which means you get comments like this, which is difficult to read coming from someone who like me is a patient with ME. I appreciate, that there is little awareness in regards to the illness but I’m in a position which means I can do this and I can get behind the messages of the charities to give awareness and understanding. With millions suffering, it needs those at the milder end of the spectrum to speak up and be a voice for those who can’t speak and cannot voice their concerns.

Ev, my post was more directed at ***** than you. I’m genuinely sorry that you are unwell but reading your Twitter profile you are not as the vast majority of us are *** mailed me, why had I not renewed my subscription? Because they have never represented me!

This came after my comeback to the comments, I couldn’t just sit there and read how those in the community would not support me or work me to raise awareness. Now, I appreciate there is anger with the charities because those in a worse condition than me feel as though, they are not supported however, as a charity they must speak for the entire community and educate the entire Nation there are different spectrums of the illness. In the same way, that those with MS are different, take Nicola Chapman from PixiWoo, to the unknowing, you wouldn’t know she had MS and this is what the commenters on social media didn’t understand. Also, this comment for me, I found to be founded from ignorance because basing your perception on a social media profile does not give you a fair enough assessment as to whether someone is unwell or even in the category of suffering with ME. As I’ve always said, social media will only depict you what it wants. I’m not going to share with you the days where I’m so tired the only thing keeping me away is the espresso i had at 8:30am and the coke I had at 1:30pm. Why? Well, what mofo wants to see what my work colleagues and family members have to see on a daily basis, few people.

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  • Hey Ev! I think what you are doing is very positive. I’m, sadly, unable to work but really wish I could! The spectrum of severity is astounding and not to be taken lightly. To see you manage a job and cope with CFS ME is both refreshing and empowering. As a sufferer of five years I have learned to manage my illness as best I can and tend to live in my own little bubble. I think you perfectly represent people with CFS ME in a vibrant and positive light. If you have to be as ill as me before you can blog about this condition nothing would ever happen because I’m too tired to write a blog! I think you are doing a fab job and am grateful to you for spreading the word and discussing this dreadful illness.