Friday 16 November 2012

How to be alone: Day 16 #NHBPM

"What about day 15?" I hear you say. Well Day 15 went past in a blur of "OMG I really don't feel right!" complete with numb face and rapidly greying vision* followed by waking up on the couch 3hrs later with a drool covered pillow stuck to my face. Sexy, no? Needless to say blogging went out the window in favour of wallowing in self-pity and being rockingly incoherent.

But I'm back baby. Tapping away for Day 16 like yesterday never happened.

Today's topic is easy.

Use a picture or video to inspire a post.

I have loved this video by filmaker, Andrea Dorfman, and poet/singer/songwriter, Tanya Davis, since I first saw it a few years ago.

 I have always been comfortable with my own company. In fact, I find I relax much better when by myself than with others. I like the time to clear my head and just be. I've been that way ever since I was a child. I was just as content, if not more, to sit by myself watching the Saturday afternoon classic movies on TV or immersing myself in a book, than out with others. I've always felt a little on the outer when I'm with other people. As if I somehow missed the secret code of fitting in, that innate shorthand of being in a group, which everyone else seemed to have mastered.

Overtime I grew to enjoy being by myself. Even pre-sick I would happily go to a movie by myself or drive into the city and go to the galleries or wander around the city laneways (Melbourne city laneways are amazing and well worth a look if you ever get the chance) for hours. I like losing myself in places and have always lived more in my head than in the real world. There is an ease, or maybe comfort, in my own company. Alone I can truly appreciate the world around me and/or immerse myself completely in an activity. And now when often there is no choice but to be by myself, I truly appreciate that comfort.

But I know for a lot of people being alone is hard. Sadly, when illness enters your life, particularly one that is chronic, many people find themselves unexpectedly alone. Initially, people are keen to help and support, but as time passes and you remain ill people tend to drift away and you find yourself spending lengthy periods of time alone.

Often even the closest of friends and family stop calling or dropping by. Illness means you can't participate in the regular aspects of life. Spontaneous social engagements are difficult when you have to plan in elements like rest and medications. Pain, weakness and fatigue don't work on a schedule. Regular social engagements may become beyond your abilities. You may have to cancel events at the last minute or leave after 10 minutes. Friends and family stop asking you to go out and illness can become a lonely road.

Learning to be alone is imperative to managing and coping with illness. But it can be a hard skill to master, especially if you are someone who thrives being with others. Even having been comfortable being alone before I became ill, I do get lonely at times. Because we all need the comfort of connecting to another human being at some point.

But it is not just the physical presence of other people. It is possible to feel very alone even when surrounded by a room full of other people. A life with chronic illness has it's own unique set of issues, emotions, and events. When you are with others who aren't ill and they are discussing their lives at work, their kids, the latest movies they've seen, the regular events of life, you can feel like the odd woman out. There is a disconnect that can be hard to move past.

Yes we can connect with others who understand thanks to social media, but you still need to master the skill of being alone. Of being comfortable with your own company. I love that the video above says it can feel uncomfortable at first, but with time you can grow to love and appreciate being alone. It's not about avoiding other people or becoming a hermit (mind you, I could probably rock the hermit lifestyle) but more knowing it's okay to be alone and being able to cope when those times come. It's about discovering yourself and all the possibilities you never would find if you are always with others. Alone is not a dirty word or something to fear. It can be beautiful and desirable when you learn to appreciate all it can give.

Michelle :)

*Just a little note for all the uninformed doctors who don't believe that you can pass out sitting down. I was sitting on my chaise lounge with my feet up when I went arse up. But it's okay if you don't believe that can happen as long as you don't mind that I don't believe that you have any idea what you're talking about.


  1. This was just what I needed today! I was just having a pity party for myself because I am alone and sick and it feels like the world is moving on without me. Thank you for this, for reminding me some very wonderful things are found in solitude if i only look for them.

  2. Aloneness is not the same as loneliness.

  3. Amazing how many doctors are so uneducated! I pass out sitting down on a regular basis. Most commonly occurring on days that I am told by family that I "functioned" on, but have no memory of.

  4. Thank you so much, feeling mutual understanding and sharing of their experiences by other Dyssy people is a great support and comfort. I was also a 'loner', even before 'Rascal' appeared in my life (thanks to you I have now named my constant companion Dizzy Rascal, as I never quite know when he is going to creep up on me the little rascal! and naming him seems to help!) and even way back people use to consider me un-sociable, I do wonder if it was because the clamour and noise of social occasions even back then was sometimes difficult to deal with. I feel sometimes that it's like the creatures in Lord of the Rings who suck the life out of the Hobbits etc; don't please get me wrong, I love the family who have stuck by me, sadly only my children, husband and my in-laws, (my mother, sister and brother think I have some form of Yuppie Flu and can 'get over it', even 7 years post-diagnosis :'{) but I can feel the energy being pulled from me when we have family get togethers, only one of my daughters is like me and can sit quietly without needing to talk, the other one and my husband, mother and father-in-law all love a good gas!
    As for some doctors, if I had the ability I would visit Dysautonomia on the relevant medical professionals (and uncaring family of suffers) just for one day, giving them all the full experience, maybe, just maybe things would change?!! I am housebound as I live in a rural community and can no longer drive (no-one told me to, I just thought it would be safer for other road users without someone whose vision blurred every time she came to a halt!) I ramble, sorry! Anyway, I think all Dyssy suffers should be issued with a sound proof room and punch bag so we can beat the hell out of our little friend when the need arises, I think this would be good for me as I always feel better when having a heated discussion with my husband, rise in blood pressure I suppose. Ok, i'm going now ;>))))) Keep up the good work x Tricia

  5. At the risk of sounding like a broken record, once again I find myself nodding vigorously in agreement with you throughout this whole piece, and very much relating to everything that you touched on, Michelle. The part about not always been able to participate in what others are doing really stands out for me, as that's something that's been an element of my reality for over a decade now. I sometimes describe (to others) as feeling like I live in a glass box or a clear plastic bubble and can see everything that goes on around me, yet am so often unable to interact with the "outside" world. Though in some ways this feeling has gotten easier to live with as time goes on, I know that it will never stop being odd/off-putting/challenging at times, and I really believe the same is true for just about everyone whose health really limits and/or impacts what they're able to do.

    Thank you very, very much for your wonderfully lovely comment on my Thanksgiving Day post this week. I completely agree with you about the importance of finding something - no matter how small - to be grateful each day, especially on the days that are the very roughest (even if what you're thankful is a comfy pillow to lay your exhausted head down on).

    ♥ Jessica

  6. My heart is aching tonight. The thought of being alone frightens me more than I could have ever imagined. I will have to face this soon. My daughter who stays with me during the day, finally found a job. While I am exceeding happy for her, I am profoundly depressed for myself. Its not like I have never been alone. I used to be alone all the time. I found it a time to do for me. While the kids were in school I could do what I needed to do and better yet do what I wanted. But getting sick changed that. Now the uncertainty of me is a frightening thing that looms over me like a thick, sickening, smothering cloud that will surely suck me in and smother me. If I am alone who will save me...


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