Spoonie Musings // Guilt and Relationships

Thursday, October 18, 2018
Many of you know that I am married and have been with my partner Xin for almost eleven years now (married for almost three). We got together towards the end of our high school years, which meant that Xin has been there for a lot of my spoonie diagnoses, tests, and operations. He is a wonderful partner, a wonderful person in general, and I love him deeply.

And yet, being chronically ill in a relationship is seriously hard sometimes.

I can't work - at least, not in the typical 9 to 5 way, and not really shift-work either (I can do some editing and writing work online but it depends how I am travelling at that point in time - ie. am I having any random flares at the moment?) - so making money is pretty much all up to Xin. He supports me financially, as well as our cat, Peppermint. Money is rough for any spoonie - shelling out the bucks for medications, treatments, surgeries, health insurance (if you're lucky enough to have it), all of it means you are paying some big moolah. I have a very specific diet that I have to follow if I want to remain even slightly healthy, and sometimes that can add up, too. Financials are stressful for any relationship, and then for spoonie relationships it is a whole new thing.

Going on dates is a somewhat difficult topic, too. Some days I can totally manage it - absolutely no worries, having a pretty good day, minimal pain or discomfort, and I can walk unaided. Score! And my stomach is okay with me having tea that day! Double score!
Then there are days when I need assistance - pain levels may be higher, discomfort present, I can't do certain things like see movies because I have a migraine on the way, or I need to make sure that I won't need to walk up loads of stairs or I have access to a cane to assist me. Toilets need to be present - alwayyyys. Just in case. Better safe than sorry. All those random cliche things.

And then... there are days when we have planned for a date and I wake up that day just feeling rubbish. Too sick to get up, heart working way too hard, standing or walking are pretty much off the table. How do you have a decent date when you can barely manage a conversation?

Guilt can rush in really quickly in times like this. And the 'if onlys'. "If only I could work a little bit, or do this thing, or that other thing, then I could make more money and there would be less stress and strain on my partner to bring home money." "I wonder what ways there are for me to make money from home (does the thing and slowly gets burnt out completely and can't even do the dishes anymore)"
"If I hadn't of >insert item eaten, activity done, thought considered here< then I would be able to go on that date today! Dammit." "I wonder if my partner minds that I can't go on dates often - it must be so hard for them, etc. etc. >making assumptions and vastly blowing everything out of proportion without actually asking partner anything<"

You can see how it can kind of get out of control.

Do I have any recommendations here? Honestly, like many spoonie conditions, I don't think there is a solve-all pill here. There is no instant cure or 'if you just remember this one step everything will be fine!' amazing result. No, this is always going to be hard - it always has been, in my experience. But I have a couple of things that I would like to suggest (and have written down so I can refer to it myself, because yeesh I forget this stuff so often):

  1. Communicate communicate communicate. You need to stop making assumptions about how your partner is feeling and actually talk to them. Seriously, I know this is really scary sometimes - what if all your worst fears are true? Well, what if? Your partner will most likely want to work through them, too, and you will grow even closer to them in the process. Bottom line: nothing is going to get any better if you're not on the same page.
  2. Compassion is a necessity. Towards your partner, towards yourself. Towards the person who is taking a superrrr long time to get out of the bathroom. I know it sucks, and it hurts, and everything feels really gross and hard, but if you can show people a little compassion - including yourself - sometimes that can make things easier. Remember - your illness or condition is already difficult enough to deal with. Don't compound that and make it doubly hard by punishing yourself in your mind.
  3. Take three deep breaths. Even just this little routine can give you a little distance from the issue and stop you from spiralling down into nothingness. Take three deep breaths, think through whether you've been down this guilt-trip before, think about whether it is helping. Repeat until things feel less awful.

I just wanted to write this for anyone else struggling with this sort of guilt - I am getting better at recognising when it comes by, but I'm still not great. It's all a process, I guess!!

Love to all who read.

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