As a person with extreme sensitivity to electro-magnetic fields (EMFs) & electro-magnetic radiation (EMR), I’ve felt for some time that I need to take some responsibility for supporting people who are in a similar situation to what I was in when I first started experiencing my severe migraine headaches, ear and face pain from EMR.
The fact I’m using this computer and do so regularly may suggest to some people that I’m not really THAT severe, but I am.
I’ve just made a choice to live with the severe pain in order to follow my passions. This is a purely personal decision based on my own values.
It’s not an easy one and possibly not a sensible one according to many people’s standards. But I know how miserable I was when I couldn’t pursue my passions and I re-choose daily to live the way I do.
That doesn’t mean everyone with electrosensitivity should (or can!) do the same.
I wrote this post some time ago after something triggered my memories of the horrible time when I first started becoming “allergic” to the world as we know it.
It was terrifying and filled me with a sense of despair. And I felt so incredibly alone. I don’t want others to feel that way if at all possible.
And so, here I have written a letter to the newly diagnosed electrosensitive person. It applies whether newly diagnosed or not.
I don’t want to become the poster girl for the electrosensitive, but I realise I’m in a position to be a support for people going through the emotional rollercoaster it involves.
The approach I take to it now is not one based on fear or obsessive avoidance. Many may not understand this approach.
I am not a victim because I choose not to be. And I guess, if you are someone reading this, and are looking for support, that’s the type of approach you can expect from me.
My motto is “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain”.
That’s what I want to help you do. Dance in the rain (the EMR-filled fog we live in!) 🙂
Letter to the Electrosensitive
Dear newly diagnosed person with electrosensitivity (ES), electro-hypersensitivity (EMHS) (or whatever it is they are calling it. Basically you’re getting severe symptoms from being around electro-magnetic fields. I didn’t know there was even a name for it when mine began over 12 years ago)
Firstly, let me say it might feel like your world has ended, but it really hasn’t.
It will just feel that way for a while, as you come to terms with the shock – the realisation that this is, in fact, possible, and yes, you are, in fact, effectively “allergic” to electric devices.
It’s not your imagination, though at times you will question your sanity and wonder if this could just be “all in your head” despite the obvious pain you feel immediately the TV is turned on or you’re near a computer.
Others will also question your sanity (maybe not to your face, but you will hear back and it’ll probably hurt your feelings).
Its okay. You are sane.
It’s not all in your head (although the pain may be!).
But you are largely on your own in this.
You may not ever find anyone who has the exact same symptoms as you. If you do, they’re unlikely to live nearby.
And they don’t tend to hang around online support forums for obvious reasons!
So yeah, that feeling of being on your own in this, of being alone in your experience, it’s not an illusion.
Unlike other times with other illnesses (eg ME/CFS) and experiences (eg divorce), it’s not a case of feeling like you’re the only one who’s ever experienced a certain thing but realising later heaps of people have had the same experience.
No. You’re unlikely to find anyone who has the exact same symptoms as you.
You are, for all intents and purposes, alone in this (but I hope me writing this will let you know there are some other weirdos like you around on the planet even if you don’t meet them).
I use the word weirdo with love. But we are aren’t we? We’re anomalies. Strange. Unusual. Unique. Bizarre. And a little weird.
Compared to “normal” people who feel totally fine around EMF/R that is.
But at the same time, everyone is a little different, strange, unusual, unique, bizarre and weird. We just found a way to make these facts a little more obvious in our worlds.
So where does that leave us?
I remember feeling so disconnected and isolated. So totally cut off from the world I once knew.
It was like I went to bed one day in one world and woke up in another – yet the worlds both looked the same. It was just the experience that was different.
I know you’re scared. Terrified, I bet.
Our greatest fear as human beings is to be excluded, to not belong, to be totally alone (apart from death and speaking in public that is!).
Some may think that they don’t fear that, but only because they feared it so much they’ve stepped away from the world before the world stepped away from them.
They think they are happier alone.
But see how they’d go if isolation was thrust upon them without their having chosen it.
See how they’d go with not only no people in their life, but no TV, no phone, no car, no heater, no fluorescent lighting.
Yep, we are facing everyone’s greatest fear.
So it’s okay to feel a little desolate at this point.
It’s kind of like standing alone at the edge of the Antarctic.
It’s normal to feel scared and sad. It’s normal to feel angry that it’s you and not someone else going through this surreal reality.
And it’s normal to grieve the things you can’t do anymore – or at least can’t do pain/symptom free.
The fact there is lots you can still do won’t matter to you at the moment.
Those things won’t register for a little while.
Like when someone you love dies, there may be lots of other people you love who are still alive, but for a certain time you can only focus on the one you have lost.
At the moment you will probably only focus on what you can no longer do, not what you can.
Eventually, depending on how long it takes to work your way through your grief and victim status, you’ll come to see there’s still a lot available to you in life.
You can still read, write, spend time in nature, have cuppas with friends and spend time with loved ones. All pain and symptom free.
Then, like I did, you might decide that it’s worth the pain/symptoms to still pursue your passions, so you might start watching TV, using the computer and generally living life again – albeit with a lot of pain.
Or you may decide you like the quiet, hermit lifestyle and adapt to it with a sense of peace rather than resentment.
I never fully managed that, but maybe you will.
Finding friends, partners and family who will come with you on that journey may be challenging, but those who do will be true gems to treasure.
I write this purely so you know you’re NOT alone.
There are others of us out here. (It sounds like we’re aliens doesn’t it? And in a way we are. I’ve certainly felt like it many times over the past 12 years).
I want to find ways to support each other.
How to do that via the web without you actually using it? I’m still working on that one.
But tonight I’ve made a decision to be your voice.
I will speak for you. I will write for you. I will support you any way I can.
Because I can!
Because I’m a fellow traveler on this electrosensitive journey, and I’m willing to live with the pain in order to let you know you’re NOT alone. You ARE connected. You ARE NOT cut off.
I am your friend, I am your connector to the world. I’m here to support you and the alien journey you’ve found yourself on.
We’re fellow E.T.’s – electrosensitive travellers.
My mission is to find all our fellow travellers and connect us all so we no longer feel alone, disconnected or cut off… and possibly, just maybe, help me make life a little more comfortable and enjoyable for us all.
I know there are other forums and websites devoted to supporting those with ES, EMHS and all the other names for it. I’ve only ventured into those worlds a few times. I wasn’t quite ready.
Sometimes those spaces are also not places that uplift me and are very filled with the fear that I have described above.
As I’ve said, that fear is totally natural, but I don’t live like that anymore so I find it challenging to be with those who are at a different stage of this journey.
I’m going to change that from now on. I’m gonna try to find all the E.Ts of the world and bring them together. Maybe we’ll find we have different interests and don’t want to be all together, but I’ll try it anyway.
So if you know of anywhere that people with ES, EMH, EMHS hang out, let me know. Or if you happen to know someone who has this silent syndrome that doesn’t even have an official name yet, please let them know I’m here.
I’ve written a number of blog posts about my experience with what I call electrosensitivity (a name I only discovered once I started using computers again). Here are the main posts:
“Allergic” to Electricity: My Story With Electrosensitivity
The Dilemma of Pain: An Unusual Choice
CFS, Pregnancy & Electrosensitivity: My Story – Part 1
CFS, Pregnancy & Electrosensitivity: My Story – Part 2
CFS, Pregnancy & Electrosensitivity: My Story – Part 3
CFS, Pregnancy & Electrosensitivity: My Story – Part 4
CFS, Pregnancy & Electrosensitivity: My Story – Part 5
Trapped in My Body: CFS, Pregnancy & Electrosensitivity
As you’ll pick up from these posts, even when I talk of the misery of it all, I also have a positive spin to put on it (or maybe not so much in the 5 pregnancy posts! Even my sunny disposition took a beating during that time).
So when I say I want to bring all people with ES, EMHS, EHS together, I don’t mean in order to marinate in our fear of electro-magnetic radiation. I mean that I want to provide a nurturing space for people to be able to be supported. If we happen to swap tips on how we manage our symptoms, that’s great, but I don’t intend to always be discussing anti-radiation devices and the like.
Let’s just be a supportive community for each other. This is scary, yes. But it’s not the end of our lives. We still have a lot to offer the world. I want to help you find a way to continue to do that while staying as symptom-free as possible.
I have no idea how many people are online who have ES/EMHS/EHS and who will read this, but I hope it helps someone.
If it does, drop me a line on Twitter @GetUpNGoGuru, on Facebook or email – Louise@GetUpAndGoGuru.com – or leave a comment below!
Thanks fellow E.Ts. For now this ET is phoning home … ie going to bed! 🙂
Keep Smiling
Louise
Deborah Ebner says
Why can we not create a common website free of sales and with a common sharing? Debbie Ebner, Anacortes, Washington, USA
Louise Bibby says
Hi Deborah,
Sorry about my delayed response. I haven’t been blogging much lately. And my answer to your question is WE CAN. WordPress.com is available to everyone to start a blog and post about anything they like. I personally haven’t made money out of my site, but I believe all the valuable information I’ve provided is well worth earning some money from if I could find a way. I deliberately have no ads on my site because I don’t like the look of them, but I do sometimes have affiliate links. My perspective is, it’s just like a newspaper or magazine. If you happen to get value out of the site, why not give back to the blogger/writer by clicking on their affiliate links. It costs the customer no more, but it gives back to the blogger who has put a lot of time and energy into providing value to readers. Also if people provide a service like coaching, then they deserve to be paid just like anyone providing a valuable service.
It sounds like you’ve got lots of information you’d like to share or create a group where people can share common information, so I say GO FOR IT! That’s the beauty of the tools we have available now. Anyone can create whatever they want.
Good luck with it and if you want any info on how to proceed please contact me.
Cheers
Louise