Monday 5 August 2013

Finding Support by Cleaning House.

(I've lost the link for this, but gosh I love it)

One of the earliest lessons I encountered when I became ill is that some people are inherently compassionate, and some are simply incapable of even understanding the term. I also learnt that sometimes compassion comes from unexpected places and sometimes it is lacking in the places where we instinctively think it will reside.

It was a hard lesson.

When I first became ill I had expected that those nearest and dearest would be there. It's a natural assumption. In our time of need we expect that our family and friends will rally. That there will be casseroles and fluffy socks. And much in the way of hand holding and support. Some get lucky. But sadly for many that is a scenario viewed only on their TV screens. The harsh reality is that not everyone will be there as we expect.

I still remember calling my a friend (now ex-friend) early on in my search for a diagnosis. I was in tears. Completely overwhelmed after being told that I may have MS. She promised to come over after work, then rang on her way home to say she was too tired and did it matter if she didn't come over. It hurt at the time and I must admit even now as I type all these years later, I still feel a twinge of that hurt. But that wasn't the first or last hurt that I have experienced over the past seven-years. Sometimes in the form of an uncaring comment, an exclusion, or action. And I know I am far from alone.

Part of me still wishes for the close and large support network that others have in their daily lives. Every day I see people diagnosed with particular illnesses and suddenly there are fundraisers, rosters to help out with cleaning and cooking, and designated drivers to get them to appointments. Admittedly, I instinctively recoil from that kind of attention, but a small part of me wishes I had even a little part of that. But I realise now, as is the case for many others, that it is simply not to be.

I don't have a casserole illness, I don't have a black and white disorder, and I don't have something that will ever get better. I live in a land of grey that is hard enough for me to navigate let alone anyone else. Society as a whole, does not do well with death, dying, or chronic illness. How do you respond to someone who will only ever slowly get worse? There are not many acute moments with Dysautonomia, just the slow trudging path of chronic illness, punctuated with yet another hospital or ED admission. No clearly defineable end in sight. Nothing to clearly fight. Normal parameters of caring, disease path or goals are no longer applicable. Few are those who can stay such a challenging path by our side. And some simply find it overwhelming or tiresome. For some your illness or suffering, is quite simply bothersome. It's a hard realisation to live with. But it is a first step in finding the positive support you need.

Being chronically ill has allowed me to clean house in a sense.

I have no doubt that I would still have a lot of those other people in my life if I had never become unwell. I also realise now that I attracted and allowed others in my life who were never really there for me even before I became ill. Back then a large part of me was so used to being in a certain roll that I never thought of it as a problem, or that I was worthy of better. It was simply how it was. And it had never been challenged. I was very independent and had always managed relying on myself alone. I was used to being the helper, not the helped. I had never been in a position where I needed true and long-term support. A position where my own reserves would run dry. My role had always been as hand-holder, and no doubt I would have continued in that role if my health hadn't deteriorated.

It was a strange and sudden change in many relationships. All of sudden my illness became an inconvenience to others. I couldn't drive to their house as I always had, and it suddenly became too far for them to drive to mine. I couldn't go out often, so they stopped inviting me. I couldn't listen on the phone for hours to their problems, so they stopped calling. I didn't get better and they became bored. I couldn't give them what they wanted so they left. My illness became boring and inconvenient.

Having people in my life who took without giving, or only giving when it suited, was exhausting. Pre-sick I had the capacity to deal with that drain and lacked the wherewithal to see the toxic nature of those relationships. Post-sick I didn't have the emotional or physical reserves to deal with their demands and it suddenly dawned on me that I could say no and that I deserved more.

It took me a long time to understand that compassion simply isn't in some people's DNA. For a long time I blamed myself. It took me a long time, and nearly a year of counselling, to understand that it was okay to say, and actually believe, I deserved better.

I like to think of my current support system as a fine wine. Over the years it has been distilled to those who truly care. I don't have to deal with the hurt that comes from fair-weather relationships. Instead I concentrate on, and am grateful for, the love and support I get from the few in my life who are really there for me. Who give me support without always reminding me how much of a burden my illness is for them.

Not having those negative influences in my life, or being able to compartmentalise those I can't avoid, has been a godsend. A gift that I recognise now, though admittedly, not so much at the time.

Now I have people in my life, in real life and online who are truly supportive. Who get me, my sense of humour and my needs. They are there to share a shoulder or a laugh at need. People I would never have expected have stepped up, and I have also made friends in the unlikeliest of places. And I discovered that supportive relationships can, and do, go both ways.

It is better to have a handful of people, or even one, in your life who truly cares, than to be surrounded by a large amount of people whose ability to care is conditional or inconsistent. Sometimes being surrounded by people who really don't care can leave you feeling more alone than actually being by yourself.

Being chronically ill you get to see the true nature of those who surround you. It is easy to be there during the good times. But when the tough times hit it quickly becomes clear who has the strength of character to stand by you. When those tough times persist or become complex, many may fade away. It's easy to feel abandoned. But it is important to also remember that often those that are left are the cream of the crop and the true of heart.

Sometimes blood and history are not a guarantee of compassion or support, no matter how much we wish it were otherwise. But that moment when you find a person who truly cares it's like a light goes on and you wonder why you put up with less.

Michelle :)


  1. Thank you for putting this into words! How you manage to write so coherently while being constantly brainfogged is beyond me! (Some days I'm lucky to get two sentences strung together!)

    I've definitely had a similar experience, although I'm still in the process of weeding people out since I haven't been sick as long as you. :) It's heartbreaking that the people you think will be there are the ones who get sick of you being sick once you reach the 3 month mark or so. Like, sheesh, sorry my chronic, debilitating illness is so BORING to you. My bad. Let me get on

    My fiance's family actually tried to convince him to leave me when I got sick! Said it wasn't fair for him to be burdened with a sick fiance for the rest of his life. Talk about compassion, right??

    I just wish I had the guts to actually cut people out...! Anyway, hang in there girly, and thanks for being you (and awesome!). :) I've never commented before, but your blog has been a godsend, and it's one of the first things I found when I got diagnosed. Thank you for your realistic, humorous take on this terrible disease! :) Somehow, it makes things just a little more manageable. <3 :)

    1. I hope you are doing well and now happily married! I have been married a year now and am so worried that my in laws think the same way. They never say anything, which makes me truly wonder! it is so hard on a spouse but I try to show him as much love as I can! Best wishes to you!

  2. Michelle, Wow. This post really touched a sore spot in me. Thanks so much for this. So much time and energy is spent on managing the physical and mental symptoms of this disorder that the social and emotional fallout is somewhere in the mess of the junk drawer. Tomorrow marks the one year anniversary of the first severe symptoms of my autonomic rebellion, and the last day I was able to work. Three inpatient hospitalizations, numerous ER visits, more specialists than I ever knew existed, the ever changing medication lists...well you know the drill. All that I've raged at, adapted, educated myself, adapted some more. What still gets me is the loss of relationships in my family. This illness, as you put it is not "curable". Over and over with doctor visits and tests each question is the same; "So do they know how to fix you now? Do they know what's wrong? "What are they going to do to make you better?" When the answers don't meet the questioners expectations, then the suggestions of alternate diagnoses ensue...maybe its this random disease...because it's taking too long for them. For what? Not being there to provide babysitting services? To listen, to be there and offer support for their crisis of health or relationships or rather ordinary chronic illness free life. After the first two months of the dysautonomia the help from family was gone, along with some friends. It has been another process of adaptation, but you're right not everyone comes with a compassion gene. Not even those we call family. Other friends stepped up, more than I would have ever asked them too, reorganizing their lives, changing their plans to get me to appointments, to be there when I needed the support. To know I needed someone to listen when I was scared in the hospital, to understand that bringing me my favorite socks and books would cheer me up without me even having to ask. My thanks isn't ignored, or rebuffed, no martyrs here. It is accepted with grace and warmth, because when they say "You're welcome" they mean it. They welcome me as I am, dizzy, low bp, fainting, headachy, tachy, couch potato day that can quickly get worse or if the stars are aligned just right better, and they are there ready to welcome the "old" me without the why, how what does this mean now? They just accept that things can change quickly.

  3. Yet again Michelle, you live in my head. You put into words what I only think. I feel sorry for those that have left you behind, only because of the friendship they are missing out on. In hindsight though, you are the lucky one here. You are such an inspiration to so many. I sincerely hope that Jeri is working out and that you continue on a path to a newer normal. Love to see the photos of you out and about. Something is always better than nothing, and I wish you and yours many years of happiness, humor and macaroons. :) Peace be with you!!

  4. Good morning Michelle, and I hope it is for you x
    How sad it is that so many of us with this 'millstone' around our necks (for that's what it feels like a lot of the time for me, energy wise) can completely relate to what you have written, reading it made me want to cry as it reminds me how the reactions of my blood relatives and 'friends' still astound me. I have only just got back in contact with my Mother, following some counselling where it was suggested that I be 'selfish' if there were things she had that belonged to me, but I should 'not expect anything support/understanding wise' and connect to satisfy myself. It is hard as I want my mum to understand and be compassionate, but I guess like you say, I can no longer drive myself over whenever needed (ha ha, that's funny!) so i'm of no help to her, whether conscious or not this still breaks my heart, and even sadder is that my sister comes from the same mould, and despite me being there for her when she had surgery for pre-breast cancer (I was on a break from Her at that time as she is very hard to deal with, so I swallowed my pride as I was concerned for her!) so I have no older 'blood' female shoulders to lean on. I do have a fantastic mother and father-in-law, no surprise as their son is one-of-a-kind, but you somehow expect your family to want to help you in any way they can, after all I know that when I was helping my Mother during the time she had to look after my Dad, who had a major stroke which he survived for 12yrs, I was pre-dysauto so could drive and would help as much as was needed, without feeling resentful, I loved and miss my Dad very much. Oh I should stop; I need to be in permanent counselling, I still don't deal with the 'slights' very well ;>\ I have put it in it's box for now and am off to make a big mug of tea and a slice of very Marmitey toast, sooo much nicer than Vegemite, sorry ;>)
    Wishing you a Good day and what about a Lammington instead of macaroons? xx

  5. Ps, Love the pic at the top of this piece, i've got it on my computer and it helps A Lot! xx

  6. I wish I had found your blog years ago! I was first diagnosed in 2011 and struggled so so much the first few years. Lost many friends and struggled with support from family. They thought I was "lazy" and could just push myself past it. One family member who I used to be very close to still doesn't get it. It's hard but I've learned that it isn't my problem it's theirs!!! That is how I choose to look at it and it has eased a lot of pain for me. Thank you for a wonderful blog full of every facet of POTS.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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