Thursday 13 March 2014

Letting it go.

A friend posted a video today about a woman with cancer who's friends and family shaved their heads in solidarity and posed for a photo shoot. It was beautiful and I must admit that I teared up. The outpouring of love and support she received in that act was touching. But part of me was also sad. Sad because for so many in similar situations that level of support will only ever be viewed vicariously.

Serious and chronic illness is a litmus test of our relationships. The bonds we have with friends and family are laid bare and many come up lacking. It quickly becomes clear who values you and who doesn't. It quickly becomes clear that bonds of blood and time are not indicators of support. It can be a hard pill to swallow. And, as my reaction to this video reminds me, it is something with which I continue to struggle.

Part of me still wants and expects that certain people will step up. That they will suddenly change their behaviour and act even partway like the people in that video. If past behaviour is the best predictor of future behaviour I should know by now that it's never going to happen. But part of me still hopes. And old hurts are opened anew. You'd think at age 40 I'd have come to terms with those hurts. But instead I sit here musing over feelings that seem to be sitting just below the surface waiting for something to prompt them to rise again.

I'm not alone in these feelings. I've spoken with many other patients who experience the same hurts. Dysautonomia is not a casserole illness, even at the best of times. It's hard to understand, and has no cure. It can last for years and the deterioration can be slow and punctuated by repeated exacerbations. Sustaining the momentum of caring can be exhausting. And yet some manage. When I see others who are surrounded by numerous loved ones, lifting them up and going out of their way time and again to support them, it brings home that that is not my experience.

Some days I am better at dealing with the hurt and others it is hard. I wish I knew the secret of how to let those hurts go. To move on and focus only on the few who have stood the test of time. The true gems in my life. But part of me continues to gnaw on those wounds. To pick them apart and poke them till they bleed.

Illness is a lonely process. No one can share what you go through. But they can provide support. It doesn't take much. A phone call. A text. A silly joke posted on Facebook. A reminder that they are thinking of you, and that they care. A reminder that your life and your experience matters.

It is hard to understand when that doesn't happen. It goes against how I would act should our positions be reversed. When they have been reversed.

I am grateful every day for those who show they care, online and in real life. For those core people who make me feel loved and safe. Who hold my hand when I need it, instead of expecting me to hold theirs because my illness is a burden to them. For those who offer their concern and care and don't tell me how much of an imposition or hardship it has been for them. For those who know what I deal with and how I deal with it, and don't flit in only to tell me how to manage my illness that they nothing about, before flitting out again. For those who give me dedicated time rather than the scraps left over from their busy lives.

I'm going to work on letting those people and the hurt they represent, go.

I'm going to focus on the few who matter. The few who bring love and joy into my life.

I'm letting go of the rest.

I'm going to give myself 
the gift 
of starting the process.
To end expectations.
To end false hope.
This time
I'm going to heal
and shake off the burden
of hurt 
and disappointment.
I need to.
I have to.
I'm letting it go.



  1. You are uncanny in the timing of some of your blogs, Michelle. This one spoke to me enormously as I sure it will to many more. Thank you for your words that mean so much to me in my little world.

    1. Thank you Anna xx I'm always glad to hear my words can help someone, but equally sad when they can relate to issues like this. It seems such a common theme in the chronic illness world. Hugs to you.

  2. Really poignant post Michelle. we need to focus on gratitude and not dashed expectations but sometimes it's hard and not least because we wonder at our own judgement for expecting better from these individuals/investing time and emotional energy into what we thought was a friendship. Good luck, God bless and remember some people are like slinkies, pretty useless but you can't help smiling when they fall down stairs.

    1. Love that last line Melinda. Made me laugh. :)

  3. Really well timed as Anna said. I have let go so many but today the pain of loss is huge. I thought the friends I had now I could trust not to hurt me but *surprise*. Just hold on to how loved and adored you are by so many Michelle.

    Caroline xxx

    1. I'm so sorry Caroline. Must admit over the years it all adds up to not letting very many people get close as you get sick of the disappointment. Sending love and hugs your way today xx

  4. I find your posts amazing. They're inspiring and uplifting.

    I hope you continue to write fabulous blogs and keep us all entertained with a smile on our face, whilst battling our own personal war.

    You have kept me going though many a dark moment. Please keep the humour & positive vibes going xx :)

    1. Thank you Anon. I'm glad I can help even a little to make things easier :)

  5. Oh boy, does this hit home. It's hard, the letting go. I'm not very good at it. But I'm going to keep trying. Good luck to you, too, as you try.

    1. Good luck to you too. It's a hard process but maybe knowing others are trying too can help us all :)

  6. Yep. I'm coming to grips with this as well… I think it's a process that comes up again and again in various incarnations throughout our journey. Sucks, but there it is.

  7. I think you're right Cassandra. Each time I think I'm done with it, up it pops again. Given the response over on the blog FB page when I put the link up it seems to be a sad but common theme for many. xx

  8. This post came at such an important time. Thanks for this.

    I don't have dysautonomia - I have the mast cell activation disorder (MCAD) that some POTS folks also seem to have. I've only been diagnosed for a few months, and I thought I'd overcome a lot of sadness over the isolation already, but for some reason today it really hit home. I have so few friends who have stayed close since illness really hit.

    Most simply drifted away and showed how much our friendship was based on my ability to do the things that they enjoyed, rather than a true connection. It's so hard sometimes to realize how little of an impact you have made on so many people's lives, even after years of contact. :-(

  9. Hey thanks for all the joy you bring. Always writing about things we they to bury down. I think rejection should be listed as a side effect of Dysautonomia. I would say 95% of us will deal with it from friends and family members... Not many have the guts to be a friend in weaknes

  10. Once again, spot on and so very timely! Your posts are always a highlight to my day. I'm grateful for your joy for writing, as it touches the souls of many. It's beautiful that you can share such insight and light on these topics, and let out your own stressors as well. You always bless me, Michelle! Thank you! Feel better. :)

  11. Thank you! I needed this today.

  12. Well said Michelle. This resonates with me strongly. Thank you for writing this post. I appreciate your wit, compassion, insight and fabulous sense of humour. Reading your blog makes me feel good.


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