The Dysautonomia Divide

Relationships are an emotional engineering feat. There’s communication, so easy to get wrong, a thoughtless word can drive a canyon between two people. There’s the non verbal stuff, body language, expressions, eye contact (or lack of it).  There’s building intimacy and trust, or letting that slide.  Another great divide.

There are so many unintentional ways we can trip our relationships up.  My primary relationship is with a man, so we have gender difference warping our perspectives and carving new terrain for intrepid exploration.  He’s direct.  I’m sensitive.  What a winning combination. Not.

Sometimes I’m tired of strapping on the explorer kit and mapping the divide.  I get frustrated and fed up with the effort it takes to make it all work. It’s not easy maintaining a healthy relationship.  Is it worth it?  Absolutely.  But when I am scaling the sheer slick rock face of another misunderstanding, I think how nice it would be if we could cut to the chase and mind meld.

A little discussion was had this morning about Zed’s school concert.
“I don’t think I can go this time, honey” I said.  I knew it the moment I woke.  It is a fact of Dysautonomia that I miss out on many of the things that really matter to me as a Mum.  That means my kids miss out too.
(sigh) “Is this how it is for single parent families?” he thought out loud.
Then: (another sigh) “We ARE a single parent family.”

Ouch.

He left the room and went on to the next thing before he could see my eyes fill with tears.  My face turned toward the window.  I stared out at the grey day outside. My thoughts weren’t very pretty in that moment. I thought about what I must be to him. He doesn’t know how it feels to be inside this body.  He sees, this lump in the bed. This drain on his energy and patience. The not-so-silent partner, making my demands but not able to support him every time he needs it. I thought then about how unattractive I must be, this lumpy useless person I have become. Often so lost in my own health struggle, there is little left to give.

And then, I got really angry. I assessed who I am as a parent.  What I offer my kids in spite of my compromised abilities. I thought about all the things I do manage to get to, the smile-though-the-small-talk just for the chance to see my kids do something at school. The meals I cook, gripping on to the bench and willing myself through to the finished stage. I thought about sitting up at the bench to pre-wrap sandwiches and lunchbox snacks, long after my best-before had been and gone.  About morning cuddles on my bed with my babies, good long deep-and-meaningfuls. I thought about all the little bits of evidence that I am doing my best, despite Dysautonomia.  I am still parenting.  I whipped all that up into a whirlwind of objection.

And I told him how much it hurt to hear him suggest he parents on his own.
He was exasperated.  “That’s not how I meant it!  Why can’t you take it the way it was intended?”
And again, we are surveying the divide.  We decide we can, with some teamwork, breach the gap.

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These discussions aren’t uncommon for us. Relationships are hard work.  Once our bridge was built, we took a moment to discuss the difficulty of relationships in the context of chronic illness.  I asked if I could write about our morning argument and he agreed. I asked him what the worst part of our marriage is for him. If you too are living with chronic illness, you know all too well what the perspective of the sick person is. Here are his reflections from the bloke point of view, the other side of the dysautonomia divide.

“One of the hardest things to cope with is the inconsistency around the margins. I can never predict if you’ll be able to help or be of no help, I have to be able to roll with that. Even when I’m exhausted from a big day.

I carry a lot of guilt towards the kids, I seem to spend so much time doing necessary stuff around the house instead of hanging out with them or doing fun stuff.

I have to watch myself.  It is easy to compare what would’ve been with the way it is. That can be really depressing.  It’s best if I don’t compare.  I feel sad about what the kids are missing out on by not having an active mum. I try not to think about what I am missing out on.

I am balancing the challenge of work, sick wife, kids. If I need to do more at home, that’s less time working and earning.  There’s a knock on effect. That doesn’t leave me much mental space. I grind through every day trying to be optimistic. But it’s not easy.  Sometimes I have to go and smash zombies with my cricket bat*”

“So, why do you think our marriage still works?” I asked.

“We love each other, we’re friends, we’re supportive and we don’t let our differences fester. We make ourselves deal with it. Generally we dovetail really well.  We are tolerant of each other.  We respect and trust each other.  We believe that the other has our best interests at heart.  So there is room to argue and get over it.

Also, we’re committed to our future; we’re both working really hard towards it.  I work hard to earn the money and keep the family going, you work hard to find a solution to the health situation. We’re both pulling in the same direction.


It’s like Jack Reacher said in the last Lee Child novel. ‘You have to expect the best and plan for the worst’. I’ve seen you through so many dips. We have always come out the other side at some point. Also, I’m optimistic about recent treatment possibilities.  There are lots of arrows pointing in the same direction. Is that wishful thinking?  That’s what optimism is.

It’s like when Team New Zealand were racing in the America’s Cup. Every time you lose a race it dents your confidence.  But you still have team spirit. You still believe it’s possible. We are a team.”

* don’t worry, it’s a computer game.
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Does your relationship suffer because one of you is ill?
What do you do to keep it together?
How do you bridge the divide?

17 thoughts on “The Dysautonomia Divide”

  1. Rachel you to are amazing! You are both dealing with so much, you make a great team! You have a “keeper” ! Thinking of you both x

    1. Thanks Jules. Every relationship has its ‘canyons’. I think it is a miracle that men and women get it together sometimes! thanks for the encouragement, you are a lovely friend to me Jules. X

  2. There’s so much Love between you two. You two have got it together despite “dysautonomia”. You’re a constant reminder to appreciate the simple things in life. Love you Rach, you’re such a beautiful person.

    1. Aw, thanks Fapiola. There is so much to celebrate in my relationship with the hubster. It’s good to have a strong ethos for the relationship to stand on, but boy, we have our dooozies!

  3. Through all the years I’ve known you, you have remained one strong positive lady. So happy you have a great guy by your side to share your journey with.

  4. Your husband communicates so damn well.

    You are enough, Rachel. Being a mother is not about the things you do. It’s connection.

    Loves x

  5. Ah, relationships, so difficult to navigate at the best of times. Reading how exasperated your man became when you confronted him. Mine is the same. He often tells me that I misinterpret his words, his meaning. That may be true, but it doesn’t mean my feelings are any less relevant in that moment.

    That is the difference between a relationship that lasts and one that doesn’t – the ability to communicate, to work through, to hold each other above the water line, even when you feel you can’t any longer. You dig deep and you make it work.

    You make it work, it is messy absolutely, but it is beautiful in the end.

    Keep writing Rachel, it is so lovely to read.

    xx

    1. A beautiful mess. That’s love all right! I’m glad to have a hubster who will try to build bridges with me. I’ve been in relationships before where the resolving of stuff never happens. It can be a slow suffocation. Having arguments is painful but necessary, we think anyway!

  6. That was really hard to read. I’ve been on both sides of the divide and I have to say honestly that the spouse of a chronically ill person has a hard lonely time of it. You just can’t feel what they go through until you go through it yourself. Your husband is a hero – like those firemen who ran into the collapsing towers on 9/11 as everyone else ran out.

    My first husband died of a rare form of cancer. Working to keep the health insurance and a roof over our head,then coming home to try to take care of him almost took me down. Your husband explained it very well but he left out the feelings of guilt and frustration and anger-yes we’re human-sometimes we are angry.

    Now, ironically, I’m the sick one and I completely understand how my sick husband must have felt-a bit too late since he died years ago.

    My current husband-The Jerk-has no empathy I mean zero-zip-nada empathy. So I’m getting a taste of it from both sides. Both are extremely tough. Only one thing makes it worth while and that’s love. Even if the bad times outweigh the good-you have a rare and precious bird. I don’t know why relationships are so difficult but I think the better they are the more work they require. I can assure you of one thing though-the more you communicate the better your relationship will get over time.

    And the kids-well, I had two perfectly healthy parents who never did any of the things you do for yours Rach. Yeah, they attended my school things and recitals but not once did we ever cuddle. They never said “I love you” and I’d trade the showing up for functions anytime to have been hugged and made to feel loved.

    1. Yes, my hubster is a hero. He too gets very frustrated and angry. But I think we both have more confidence in our relationship since my diagnosis than ever before. It feels like if we have got through this much, we could get through the rest. I am so sorry your late husband isn’t here to nurture you Barb. It’s so rough to be saddled with an empathy deficient jerk. What you wrote about parenting made both hubster and I cry. Thank you. Wish I could go back in time and wrap my arms around little Barbara who needed more love than she got. You are such a beautiful person and show such kindness to everyone in the online world we’re part of. Such beauty often grows out of hardship, but I still wish you had not had such a hard road to travel. X

      1. What a sweet sweet thing to say. You’re making me cry again. I know you’re somewhat non-religious but my priest told me that I have the “gift of tears” when I told him that I couldn’t stop crying because the mass was almost too beautiful to bear. I think you also have that gift.

        And I think direct & sensitive is a brilliant match. There’s a reason they say opposites attract. xx

        1. I heard a song on the radio today and one of the lines was
          “There’s one perfect fit
          And, sugar, this one is it” (Peaches and Herb -Reunited)

          I think I’ll keep ‘im! 😉

  7. Such an honest, thoughtful post Rachel. It was an honour to read about how you and your partner navigate difficult days, and communicate so well. Thank you for sharing, Pia.
    PS: LOVE me a bit of Jack Reacher – I’m yet to read the latest installment…

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