Spouses + partners of chronic illness

This is a post I've been meaning to write for so long, and putting off until I could fully do it justice, but I'm realizing that maybe it's better if I just actually publish it rather than keep waiting until it's perfect. I don't have the best cognitive powers today since I'm not feeling well, but as I head into a week I know will be very physically and emotionally challenging, this is at the front of my mind and I wanted to get it out there. 

This is very much written about hetero/cis couples and might not fit with the dynamic in relationships that don't fit that label. Or maybe they might. I'm writing about my own experience and some that I've observed, and will be using that language, but I would love to hear from people who have stories that do or don't fit with that in comments!

I feel like women don't get a lot of credit for caregiving, that it's assumed and expected that they will perform that role. But men are by contrast treated with this attitude like they are not capable of or willing to being caregivers like women. That leads to two problems: 

  1. Men are assumed to be lesser or unwilling caregivers, which isn't fair or supportive to them.
  2. Men sometimes get a type of acclaim that women don't, when they step up to the plate to do what women often do without any special acknowledgement.

Admittedly, I just came across the results of a research study that says men are actually much more likely than women to leave a relationship after their spouse is diagnosed with a long term illness. So maybe it's not just a stereotype - but my point is many men do stay, and go the distance with their sick or disabled partners. That doesn't mean it's easy for them - caregivers are more likely to become isolated and depressed, it's been documented many times - but I think it's important to point out the problematic nature of this double standard, which helps no one!

Chronic illness is so hard for the people who live with it - it changes life in ways that people outside of that individual and family never really see or comprehend. It's hard for the spouse, parents, siblings, best friends... everyone who really loves a person with chronic illness is in it with them, even if they never experience the illness itself. The ones who don't really care disappear, and fast. But it's especially hard for the spouses/partners who are there living this life with the chronically ill person, day in, day out. They feel the impact of it along with the person, they have more responsibilities (both practical and financial), less leisure time, more isolation, losing friends, conflict with family members... Many of the same things the chronically ill person deals with - but for them it's not mandatory, it's a choice, and not one that's usually taken lightly. 

Externally, you might see the highlight reel of life: the rare trip or excursion, smiling, carefree (though usually beneath the surface there is still the usual pain and fatigue and illness going on, and the anticipation of having to recover from the exertion). This one below is from April 2014, and it's a great picture taken on a ferry during a holiday. It was the last time I left Vancouver, to go to Victoria for a weekend. I was fairly sick during that trip, thanks to having a major allergic reaction to a medical test I'd had the day before leaving, no doubt made worse because the hotel we stayed at very unfortunately did not accommodate our request for an allergy-friendly room. It was horrendously dusty, and full of feather-filled bedding, and was just too much for my already fragile body to handle.

The trip sparked off a couple months of additional rashes and digestive problems, and drove home the point that maybe I should just be staying close to home for a while. I've been too ill to travel since then as well, and ended up cancelling my ticket to join Bruno on a visit to his family and friends in Belgium only a few months later. We were also supposed to stop in Iceland for a few days - something I've dreamed of for years. He went on the trip solo, skipping the Iceland leg, and a friend came and stayed with me for three weeks last minute, because I was so unwell I didn't feel safe being on my own. The decision not to go was difficult for both of us, and there was not really any better way out of the situation.

So as much as a smiling happy day photo is fun, and something we can look back on with happy somewhat idealistic nostalgia, the reality of our day-to-day life often looks a lot more like this:

And this:

And yes, we are grateful we can sit together and watch a movie or some Star Trek, or hold hands in a doctor's waiting room. But it's hard not to sometimes compare it to what other people are doing - traveling, adventures, having kids... Partners of people with chronic illness go to a lot of doctor's appointments - that aren't theirs. Take time off work for medical tests - that aren't theirs. Do extra errands and chores - that aren't for themselves. I know I would do it too if the roles are reversed, but it's a choice, and that Bruno does it with love - and at least most of the time, free of resentment - is a bigger gift to me than I could have ever hoped for. I know it's true for many other chronically ill couples, and that there are many other generous, loving spouses who have stuck by their beloveds, who truly understand that it is not their fault, but the illnesses that life has changed. It's life, it's our lives, and we adjust and make the most of it, because it's better than the alternatives.

Chronic illness is affecting SO MANY young women (and couples)

What is going on??? I know so many young women in their late 20's and 30's whose lives have been completely derailed by chronic illness and/or mental health issues. I am certain there's a big story to uncover here, and maybe I'll try and look into it more one day, but it's a bloody epidemic. I feel like every couple weeks, I hear that another young woman I know has had to stop working because of chronic illness, or has started to have trouble living independently because of ongoing health issues. The fact that every respondent of my survey was female is telling.

During a time when we should be having families (if they want to), building our careers, and establishing ourselves as independent adults, we are disappearing from the outside world into a vortex of sickness, fear, confusion, and a slow and broken healthcare system.

Some of us go through this alone, and I have so much respect for those who do. I've been single for large chunks of my adult, chronically ill life, but I've been lucky to have a partner since it became harder to function independently a few years ago. It was hard enough back then, and though I'm sure I would have figured something out, I can only imagine it is unbearably hard at times going through this alone. The reality of having to move back in with parents or into some kind of assisted living at this age is a reality for some people. It takes immense bravery and self-compassion no matter how we get through this either way, and some of us are incredibly lucky to have loving, committed partners who stick by us. They embark on this, at times very difficult and confusing, journey that's nothing like what any of us imagined life to be like during this time of our lives. 

My story and others...

Possibly one of my favourite things online about this topic is this fantastic episode of a live chat for people in the Autoimmune Paleo (AIP) community, The Autoimmune Connection, where the partners of a few of the AIP bloggers got together and talked about what it's been like for them. They cover a lot about how the dietary changes have affected them, and also what it's been like being the partner or spouse of someone who's become chronically ill, some with worsening illness, some who have had remissions. Bruno and I watched it together, and he also really enjoyed seeing what these guys had to say, as despite there being a lot of spouses and partners of chronically ill people out there, it seems almost more isolating than actually being chronically ill. There's not exactly a well-organized and vocal community of caregivers/partners of chronically ill spouses out there, like there are chronic illness communities. But maybe there should be!

I wrote up a bit of my own relationship with chronic illness story as a tribute to my partner Bruno a while back, and have also come across some others that I want to share with you and document here:

I hope that somehow my ramblings and these resources can provide both some comfort, and be a prompt to talk more openly about how chronic illness affects spouses/partners and couples rather than only the sick or disabled person. I'd love to hear your thoughts so feel free to comment, and also share any other resources you've found!