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Why We Need to Tell Our ME Stories

Why We Need to Tell Our ME Stories...
ME is regarded as an invisible illness. My friends and family can take one look at me and know when I am having a particularly bad day, but the actual symptoms and severity cannot always be seen from the surface. One of the most important things you can do as an ME sufferer is to tell your story. So today I want to tell you why we need to tell our ME stories and to talk about some of the ways you can share your experiences.

On most social media sites, depending on the friends and groups you follow, you’ll often see meme’s doing the rounds which urge ill people to think positively. The whole positive thinking school of thought especially as it used to shame, bully and further isolate ill people is something I feel very strongly about and it is something I plan to talk about in detail at a later date. But for now, I mention these meme’s in relation to the way they encourage ill people not to talk about their experiences. Here are just 2 quotes:

“Never own a disease. Reduce the amount of time that you talk about being ill. Refuse to allow illness a place in your consciousness.”
“Refuse to be ill. Never tell people you are ill; never own it to yourself. Illness is one of those things which a man should resist on principle.”

I can tell you this type of advice (if it can even be called advice) is not at all helpful. I know because I did it for the longest time. Instead, it was only when I accepted I had an illness called ME, began to read other people’s experiences and eventually began to share my own experiences with sufferers and non-sufferers alike was I able to free myself and begin to rebuild a life. If every sufferer followed the advice to resist their illness and not own it, there would not be anyone campaigning for more research into the illness nor would there be any charity organisations helping to raise awareness and support the ill. All ME sufferers would be locked alone within their illness without blogs, social media friends or forums in which to connect with others and to take solace from the fact that there are others in this same, rickety old boat. We would truly be invisible and while that would be great for everyone else, not so much for us. Pretending we’re not ill or that we’re happy with our lot is not going to achieve anything.

When I first became ill it was a struggle to deal with the all the symptoms my usually healthy body was exhibiting. But I can tell you one thing for sure, as hard as it was to deal with the fatigue and pain, there were other things that were so much harder to come to terms with. No-one around me understood how I felt. I was so ill, but my friends and family couldn’t grasp exactly how ill I was. A lot of this was to do with the fact that I hadn’t come to terms with my illness myself, and I didn’t have the health or the energy to help others understand that which I did not understand myself.

Even when I did come to terms with the fact that my body was riddled with an illness, I had such a horrendous time dealing with changes such as the loss of work and the state of my finances, but even worse was the social isolation. I felt so alone and some days I even questioned my sanity; could I really feel so ill and yet no-one could see it? I received little to no help from the medical sector.

What saved me was a book I read called ‘Verity Red’s Diary’ by Maria Mann. As the name suggests the story is a diary. It is a fictionalised account but draws on the authors own experiences with ME. I suddenly realised that there were other sufferers out there and to this day I thank Maria Mann for writing that book. I read the stories of other ME sufferers online, I corresponded with them and suddenly I was not so alone and misunderstood. That was the turning point for me. I felt more comfortable about talking about my illness with other people in my life and suddenly they began to get it. OK, so not everyone got it, but because I felt so much more centred within myself, those people who judged or were plain mean didn’t affect me anymore. Over the next few years I began to feel more comfortable about writing articles online about my life as a ME sufferer. After I realised the importance of sharing our experiences, I began this blog. It was scary at first, but two and a half years on, the blog has helped me so much and I’d like to think others too.

So let me break it down, here are the 4 main reasons you must tell your story:

  1. It will help you to make sense of what you are going through. Naturally we shy away from anything that has the potential to hurt us, so it feels like talking about an illness will hurt us more. But one of the things I have learned by sharing my experiences with others is that as ill as I am, as hard as my life is, I achieve a lot and am stronger than I ever imagined possible. This is true for just about every ME sufferer I have ever come across and I am sure it is true about you too.
  2. You will help non-sufferers to understand the illness. This is an important one because if you have even moderate ME your life will change and it is important that the people around you understand this. If you never talk about being ill or how your illness affects you, how will the people closest to you understand? When you’re not well enough to attend that family christening, or can’t do your share of household chores, how will others react if they don’t know the extent of your illness? Or worse, you’ll push yourself to do more than you can and end up making yourself more ill.
  3. Your story may help someone else. At the very least you’re letting someone else know that there are others in the same boat. The way you have dealt with your illness could help some else deal with theirs; even if you think you’ve been struggling. Even those struggles can give another person solace. You’d be amazed at how often when I’ve been with a group of ME sufferers talking about our shared experiences, more often than not we laugh at the stupid treatments we’ve tried or the silly things people have said. It’s not about spreading the misery.
  4. Yesterday I wrote about how the Conservative government has been targeting the ill for welfare and NHS cuts. ME sufferers are at the top of the list of people who are declared ‘fit for work’ or denied medical help. We have to show the world that we are very ill, but receive little to no help. Our very survival depends on this.

So how can you tell your ME story?

  • One of the basic ways is to feel more comfortable in mentioning your illness to friends and family. You don’t need to talk about it constantly, but next time a loved one asks how you are, tell the truth. It can be something as simple as “I’m on new meds for my muscle spasms which aren’t fun, and it means I’m have to rest more than usual.”
  • Share a comment about your experience on an ME sufferer’s blog post, video upload or social media status. This is easier because a fellow sufferer will not only understand where you’re coming from but will often appreciate the support.
  • Write a blog post yourself about your story or a single experience. You can set up a blog for free. If this seems too daunting or you don’t feel you’ll have the energy to maintain a blog, ask another ME sufferer who has an existing blog to publish your story. I would be more than happy to publish anyone’s story on my blog. Here’s an example that I just saw this morning ‘MerelyExisting is ME’ wrote a lovely guest post called We Are Warriors .
  • Make a video. You don’t need expensive equipment to do this as just about every phone has a camera or voice recording function these days. Again, if you’re not comfortable being in front of the camera or don’t have a camera you can just record a voiceover or even just use text to convey your story. If you’re too ill to even do this, ask a family member to record you for 10 minutes when you’re feeling particularly ill and upload it to YouTube with a line or 2 about ME, or make a compilation of before and after becoming ill with ME pics. Here’s a video that Tom has made to raise awareness about ME. Tom is not a ME sufferer, but his sister is, and he will be running in the Edinburgh Marathon to raise money for ME research.

So if you are able to, please try and tell your story. If you don’t feel able to tell your story at this time, help other people share theirs by reading their posts or watching their videos and sharing these on social media sites or with friends and family. I understand it’s not easy because some days just sitting up is a struggle let alone telling your story online, but take your time and do what you can. If I can help you, let me know and I will try. You don’t know who you can help with just a few paragraphs; you may even save the life of someone who feels very alone. You can be serious and honest, or talk about some of the sillier things that have happened. Just be true to yourself; there’s no right or wrong way to do it.

Do you have any other ideas of how ME sufferers can share their stories? What have you learned from hearing other people’s stories? Let me know in the comments section.

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Ill But Still Trying for ME Awareness

Karina Hansen has been held prisoner since February 2013.

It has been over a month since I last posted here and that’s because I have been very ill but I’ve still been trying to write, especially as May was ME Awareness month. I wrote a number of posts on Bubblews about ME and living with this illness. I’d be lying if I said it has been easy; my worsening symptoms have not helped with my mood, but we can but try.

I had considered taking a break from writing about ME, but I know that it is too important to stop entirely, so I am going to continue as much as I can. I just hope I have the energy to visit my peaceful, calm places to recharge.

I think the most important article I wrote was the one about Karina Hansen and I would urge you to read her story and to sign at least one of the online petitions. You could help to save her life. Here is that article:

Help Save Karina Hansen

I’m going to ask, no, beg that you read this article in its entirety. A young woman’s life depends on it and the health of so many others too, so please just spare a few minutes. I’m going to try and cram as much information into as few words as possible. Karina Hansen, the 24 year old pictured here, is being held in a hospital against her will and the will of her family. ME is a neuro-immune illness and you can see links below to articles describing the symptoms; Karina suffers from severe ME and has been bedbound since 2009.

In February with the help of police and social workers, Karina was forcibly removed from her home by doctors. She called her family members for help, but they were not allowed to help. Imagine that Karina is your daughter or your sister and people break into your home and remove her as she calls for help. No-one tells you where she is being taken, or why, and you are not given any paperwork or a warrant. All you receive is a phone call telling you that Karina is at Hammel Neurocenter and that someone will call daily with an update but that no-one can see her for 14 days. It has now been over 3 months despite her family going to the center to see her, her parents were not allowed to visit. Her sister was permitted a short supervised visit, and she reported that Karina was non-responsive and did not appear to recognise her. Karina’s sister is a nurse and one of her carers and in her opinion Karina’s health has deteriorated significantly since she has been taken.

There is a much longer, more detailed account of this story and you can read it here: here but the fact is that this has not happened in some out of the way country, but right here in Europe, in Denmark. Even though the World Health Organisation classifies ME as a real biological illness, the Danish medical establishment ignore this and work on the basis that ME is a functional disorder, which basically means if you are in Denmark and have ME it is all in your head. The center that Karina has been taken to has never treated a person with severe ME and prescribes Graded Exercise Therapy and Cognitive Behaviour Therapy as a treatment plan. Quite frankly these could kill Karina Hansen, as happened in the UK with Sophia Mirza.

This girl’s parents are begging for help and ME organisations around the world are trying to bring attention to Karina’s plight. Her parents have tried to get legal guardianship of their daughter, but this is being ignored and they have been in contact with a member of the Danish parliament, but so far they have received no help. If you are a journalist, don’t take my work for it or the words of the other campaigners check this situation out for yourself. The situation is becoming increasingly dire every day because even though they receive phone call updates from the staff where Karina is being held the reports often conflict so no-one knows what state she is really in.

There is an online petition and a letter writing campaign asking the Danish government to stop holding Karina a prisoner and to ensure the medical staff in that country receive proper training on how to treat ME sufferers. Even if you cannot write a letter, I would really appreciate if you could sign the online petition. It can be found here.

I know I have left out so much information, but I don’t want to put people off by making this too long. If you have any questions please ask me below and I will try to answer them.

Can you believe this is happening in modern Europe?

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