I’m taking part in WEGO Health’s Health Activist Writer’s Month Challenge

Day 1 #HAWMC – Why you write – tell us a little bit about why you write about your health online and what got you started.

Why do I write? My thoughts about my reasons for writing changed several times today, so I think it’s one of those questions that becomes a barometer of where you are at any given moment.

When I started writing intermittently in a blog back in 2004, I was looking to make the invisible visible. I was searching  for sanctuary in the world. Over 8 years later, when I took part in the National Health Blog Post Month challenge, I began to sense that I was no longer apart from the world. I was a part of it.

When I write now, I’m aware of many motivations. I’m still striving to make the invisible visible, but I’m also looking for community. I’m looking for others to share experiences with. It is the “Me too!” moments that I seek: the realization that I am not alone in my suffering and my longing to transcend that suffering.

We don’t make time for connection in our lives. Even the chronically ill, like our chronically stressed ‘normal’ cousins, have many commitments and are too busy to connect. We’re too tired. I was too tired when I heard about this new blogging challenge, but I knew that was the very reason I needed to make time for it.

Today I connected with my friends online: my community. I was moved by what they wrote and shared, and relieved by that sense of “Me too!” in our search for meaning. Community is what binds us. Even if we can’t leave our homes due to chronic illness, we have found our community. It’s the way we’re able to express the commonalities of our suffering. It’s also the way we’re able to be truthful about our emotions.

Emotions are a difficult topic. It sometimes astounds me that I have navigated my way through 46 years, some 24 of those with chronic illness, and still don’t know how I feel most days. Expressing emotion is difficult for me. I know I feel things deeply, and that’s likely another key motivator for why I write. I need to understand those feelings and express them. Not just for me, but for other people who are struggling with this feeling of emotional shutdown and perhaps more especially ‘shot down’ – when other people presume to tell us how we should feel about things. We need to know others feel the same way.

Chris Dean, a very dear, funny and talented blogger at Life Your Way said it better than me, not only with her blog title but with the following comment:

Oddly enough, writing has helped keep me more honest about what I’m feeling and why. I hate writing the more “down” posts, but I do it because it’s real and honest. I think if I didn’t, it would give the false appearance that you can manage to be “up” and “look on the bright side” all the time and that only sets people up for failure in dealing with this thing, even if it’s only life.

Just the other day, I discovered this is true not only for people with chronic illness, but for people with chronically stressed lives. I began to type “Why does” into Google, seeking the answer to a mundane web browser annoyance, when it came back with the first (and presumably most popular) search – “Why does my life suck?” In one of those nice pieces of foreshadowing to Chris’ remarks, I wrote this:

People are urged to ‘think positive’ and there’s a lot of public pressure to look happy. However, I think the contrast between that public face and reality actually generates unhappiness. If people understood that life isn’t always easy and that we can’t possibly be happy 100% of the time, I think people would feel less like outsiders when things don’t go right. They’d know that sometimes it’s okay to feel sad, and they wouldn’t have to go to Google so often to find out why their lives aren’t ‘successful’.

This pressure seems to be even greater for the chronically ill. Lately I have sought out and have been gifted spontaneously with stories of how people have literally been blamed for their chronic illnesses because they are not positive enough!

It’s hard not to want to be ‘improved’ models of ourselves under this pressure. Michael, a talented and sensitive blogger who lives with chronic pain was struggling with this when he wrote about Loving Life No Matter What. In particular, he talked about the difficult emotions and his tendency to dissociate from them. I can relate! We both share an admiration for the work of  Buddhist teacher, Tara Brach, who has been able to find the ability to be “happy for no reason” in the face of her own struggles with chronic pain.

What I was reminded of from Michael’s post is that societally we’re expected to dissociate from difficult emotions like anger, and perhaps even more so, grief. We have a commonality of suffering, but we tamp those feelings down before we fully express them. Is it any surprise that we feel dissociated from them?

Like anyone, I love being happy, but I’m not truly adverse to feeling sad. I’m guessing if I wasn’t chronically ill, I’d still have my blue days. Feeling sad is different to the mind-numbing pain of depression or the soul-rending pain of grief. The truth is, wouldn’t we be “improved” models of ourselves if we could be present with difficult emotions without running a mile?

I was 24 when I first got ill. There is nothing special about that, but I don’t think I truly grieved the loss of my health in the 23 years since then. I was angry with the doctors who weren’t forthcoming with a diagnosis, and worse, doubted my experiences. I was angry with the people who weren’t there for me, especially family. However, I turned that anger inward. I not only hated me, I hated my body. I was so cruel in hating myself!

And what about grief? I don’t think I even contemplated that it would be logical to feel grief about a life-changing illness that robbed me of so many potential futures. Although that grief shadowed me often, for example, when I had to abandon my PhD, I don’t think I even saw it for what it was. I was blindsided by grief. I pushed down all the feelings because they weren’t supposed to be there.

When I read Tara Brach’s posts about calm, loving places of self-forgiveness and self-kindness, and love of self as well as a body that seems to betray us, I know I have glimpsed those places in my life. I have had spectacular moments of inner peace, beauty, and love that have felt so revelatory that I forgot all about sickness and suffering in that moment. If I hadn’t been ill, maybe I’d have had even less of those moments without the wisdom that comes from self-examination.

Most of us yearn and struggle to find that happiness more often, but it makes me realize that there are many emotions like anger and fear and grief I have not sought to understand and have shut away. My hope is that through writing I will be able to allow some of those emotions into the light, and thereby remove some of that self-hatred, and let in more self-love.

The safest place to express emotion is in the community of our peers. So I hope during this month that in the process of sharing we will not only build our community, we will build understanding that life is indeed about the light, the shadows and all the places in between.

Many blessings,
Jane