Sometimes the road to recovery from CFS/ME can be a lonely and solitary place. Walking day after day up that mountain can often feel like too much to bear. And no matter how many times you try to explain to friends and family how you really feel, it remains difficult for them to ever appreciate just how steep your climb really is.
And yet in the fog that can surround you, now and again you come across a fellow pilgrim. Someone in the same boat. Walking with the same shoes. And you share a moment together and it all makes senses. Because after all a burden shared is a burden relieved. If only for a short time. But when you start to see that in the long run it’s all about the journey and that destinations don’t count for much anyway, those moments of solidarity and friendship can mean the world.
In my experience one look between two people with CFS/ME is often worth a thousand words. Without even having to describe your story there is an instant camaraderie, compassion and even love. This for me feels like feeding the soul. To be truly understood and accepted for just what you are. That’s why it’s such a blessing to make new friends along the road. I made such a connection just a few weeks back and thought I’d share the story….
Tamara & I
I was travelling to Europe to spend a few weeks with a girl (the one who inspired this article on love) when I received an email from Tamara. She lives in Belgium and after reading my blog over the last few months decided to get in touch.
She wrote a long and interesting email explaining the lessons she had learnt in her journey with CFS/ME. And she kept making the point that in fact we’re all one big CFS/ME community. That we’re all Neighbours…
Tamara- “That’s why I mentioned Neighbours before; aren’t we all neighbours??’
It was at this point in reading the email that a huge smile broke out across my face. You see I had just arrived in Belgium from Australia a few days earlier! With all due respect to the people of Belgium for me it’s a pretty random country and the fact that during my brief visit a local just happened to reach out and make contact was a huge coincidence. Just another synchronicity it seemed in a long chain of serendipity that has graced my journey with CFS/ME since day one. And if I’ve learnt anything over the last fews years it is to follow the coincidences as there is usually a pot of gold at the end of the rainbow. So I swiftly replied saying ‘I’m in Belgium! Lets hang out!’
Tamara- ‘This is really incredible!!!! My hair (not on my head, that would be too funny …) was standing on end when I read your reply.’
And so we met up in a beautiful vegetarian restaurant in the middle of Belgium and shared our stories, our challenges, our triumphs and our plans for getting well. It was an awesome meeting and we both agreed that while CFS/ME has been our fiercest enemy it has also been our greatest teacher. Tamara is a very switched on individual with some great insights into how to manage your recovery plan and hopefully she will be sharing her concepts with us in an article on this blog one day soon…
Tamara- ” Meetings like ours feed the soul. One is almost happy having ‘our energy problem things’ when all these interesting inspiring special events occur along the way.”
Ways to connect with new CFS friends
The first port of call is probably your local support group. Talk to the neareast CFS/ME society and get the details. Suspend your judgements and get along to the next meeting. If you don’t like the vibe you don’t have to go back! And if you dig it then there’s a whole bunch of new friends waiting to happen. Who knows one of them may hold the key to your recovery.
As Bruce Campbell (who recovered from CFS) writes: ‘One of the first things I did after receiving my diagnosis was to join two local CFS support groups…I made two good friends, one from each support group.
I remember spending many hours with each one on the phone in the first few months I was ill. They were immensely helpful, orienting me to the world of CFS. These two people and the CFS support groups gave me a sense of belonging, a feeling of being connected to others at a time of confusion and isolation.
I found there is something powerfully healing about feeling understood, all the more so for a stigmatized disease that many don’t believe is real. Also, fellow patients were tremendous sources of information and perspective, helping me to understand CFS much more quickly than I could have on my own.’
Another obvious place to find like minds is on the internet. The forum at phoenix rising is filled with very interesting people from all over the world doing all they can to find a way to recover. Reach out and drop someone an email, I find most people with CFS/ME to be very friendly and keen to help out. You’ll also most likely find someone in your area so getting together for a herbal tea (or vegetarian meal in Belgium) is always rewarding.
And finally you’ve probably got someone in your extended network that has CFS/ME. You know that friend of a friend that you’ve been meaning to get in touch with? My suggestion would be to make the effort. If not just for the companionship then for the wealth of ideas and experience you can share with each other. Maybe you’ll be the next Lennon and Mcartney or Bonny and Clyde? Maybe you’ll start a CFS/ME political party and take over the world? You don’t know until you jump into the water and find out!