The blessings of community & why I’ve missed you all

‘Community’ is my word of the year and I look forward to talking to you all again and reading your reflections and thougths

Hi friend, happy new year!

How was your holiday?

Photo by Vonecia Carswell on Unsplash

 I felt this winter was (still is) brutal. I don’t know if it’s just me, but it has felt colder and darker than usual. A lot of my chronic illness friends actually feel better during the winter (and a lot also don’t), but I don’t do well with the cold — I grew up in Tanzania where the coldest season was 28˚C and I remember wearing cardigans and Doc Martin boots during that season.

Despite being constantly surrounded by two hot water bottles and two cherry-pit heating pads and an infrared heater, I can’t seem to get warm. It’s as if my bones are cold. 

I’m not one to complain about the darkness as I’m highly light sensitive, but I found myself craving more light in my blackout-curtain-drawn room. I’ve heard that red lights are easier for the light sensitive so I bought some Himalaya salt lamps to stand on the floor (I guess they are more orange than red), where I can’t see them and so the light doesn’t catch my eyes. They give off an orange-red hue, but without providing too much light. It works! And it’s cozy for this dark winter. 

Thanks to

Esmé Weijun Wang

from the

The Unexpected Shape with Esmé Weijun Wang

(if you're a writer living with limitations then check her out) I found Susannah Conway’s Unravel Your Year Workbook.

One of the exercises is to find your ‘word of the year’ and mine turned out to be COMMUNITY.

I visualised my perfect day and while most of it is spent in bed doing nothing, because that’s just how it is with a body like this, I found myself wanting to answer comments and chat with different like-minded people from around the world. I love hearing other people’s thoughts and reflections. And I love connecting.

I began my online journey in 2011 when I first became sick. For four years prior I was a programme coordinator at a global non-profit child rights organisation and I traveled during large chunks of the year to east and northern Africa.

When I became ill, I knew that I would never be able to hold a job like that again, even without the travels. At first I became a yoga teacher, but I was only able to teach six hours a week and the rest of the time I had PEM (post exertional malaise) or was so exhausted I could barely think. After a year I became even more ill and I had to stop teaching yoga, I needed something I could do from bed.

So I started an online coaching business. It was all done in an energy of confusion and desperation because I didn’t know I was sick, I thought I was ‘just’ burnt out. That’s what doctors and alternative practitioners kept telling me. I didn’t understand how exertion affected me — I thought I had to push through it. And I didn’t understand that I was in fact disabled.

This meant that I never felt completely authentic in my marketing and communication online. I always had an inkling that something was missing or that I was part of the wrong crowd.

This became apparent when I was finally diagnosed with ME/CFS and I didn’t feel comfortable divulging my diagnosis. The crowd that I had attracted were mainly holistic practitioners or coaches of various kinds and most of them held the belief that illness is something one attracts because of spiritual, mental and emotional blocks within — and the reason why you’re still sick is becuase you’re holding on to something. There was a lot of self-blame there, even though at first I felt control and empowerment (I’ll write more on this in another post) and I felt shamed. 

When I finally accepted my illness I knew I had to quit my small online business (I was struggling). I wrote out my final email and divulged my diagnosis. I got hundreds of emails from people with a similar message: “Just heal xyz inside you and your illness will disappear.” And I received numerous stories of how they had healed this and this ailment with this and that healing modality and if they can do it so can I. I had already tried all their suggestions and these emails pissed me off. I also received a good amount of compasionate emails. This is not a criticism of holistic practitioners (there are lots of people doing excellent work), but a criticism of the self-blame philosophy that is often pushed onto chronically ill people and the idea that if you healed an ailment another person can heal their chronic illness in the same way.

I had tried for many years prior to my diagnosis to ‘heal away’ my physical illness with various healing modalities, but I kept getting worse. I felt like a failure because I couldn’t do what all these people were telling me was possible.

Honestly, I was elated to depart from this crowd and I could finally begin a journey of healing the shame I had accumulated from all the self-blame. 

Now that I’ve finally healed the majority of my shame, have understood who I am in this new body, have accepted my identity as a disabled woman and have understood that unjust systems create trauma, I feel deep gratitude to the community here at The Bed Perspective. I feel like I have finally come home.

I have been in isolation for many years (and still am physcially as I cannot leave the house), but connecting with you all lessens the dreariness of it all.

I hope to build on this community, offer you words that resonate and that help you create a kinder, more compassionate and understanding relationship to yourself and others.

I’ve also come up with an additional idea for you that I can’t wait to share with you! More on that later.

Next Wednesday’s post is a serious one. It’s about the real-life consequences of viewing ME/CFS (the illness that I live with) as psychosomatic. Here in Denmark the health authorities still hold a psychosomatic view of ME/CFS and the consequences are heinous. 

Thank you for being here! 

Lots of love,

Madelleine

I’d love to know…

What were your holidays like (if you had a holiday)?

Are you totally pooped after all the festivities or was it calm and quiet enough for you to rest?

What is your relationship like with this time of year?

I’d love to hear from you in the comments below.