Had an incredible time today as I was interviewed on a podcast about disability, where I got to talk about not only being disabled, but being part of a disabled family, and the highs and the lows of that. One of the questions I was asked was, How do your different disabilities play a role in your relationship dynamic?
Here’s a little sample of what I shared:
Having anyone in a family with a disability affects the dynamic, because first of all that person likely requires some extra supports that we don’t normally think of in the relationship dynamic – maybe help with personal care or help with emotional regulation or help physically navigating a space or help with executive functioning skills or whatever.
But then secondly, being disabled – and navigating an able-bodied world as a disabled person – is tiring. My therapist taught me that when we think of our sort of ‘threshold’ for stress, we often think of it as having separate ‘tanks’ – like you’d have a pain tank or a fatigue tank or a ‘stressors’ tank – but it’s not like that. Everything’s lumped in together. So for me, when my pain is at its usual 3-5 out of ten, that’s taken up 3-5 stressor points in my capacity to cope with life before I even get out of bed, or deal with laundry or tried to convince exhausted teenagers that it’s time to catch the schoolbus or whatever. Does that make sense?
And then, when you have MULTIPLE people who are disabled in a family – including your partner – then there’s no one with a ‘full’ tank to be able to pick up the slack. We kind of sink or swim by leaning just enough on one another that we stay upright without leaning so much that we knock each other over!
I think there are probably four areas where we see this really big-time:
#1 would be energy capacity – because being autistic and working full time at a higher-stress job in Toronto means my husband is having to work very hard to ‘pass’ as neurotypical a lot of the time during the day. I have an energy condition but like to pretend that I’m still capable of many things myself. This leaves the two of us both exhausted and wishing the other person could take care of us at the end of the day.
#2 would be emotional interactions. One of the things our autism does is that it amplifies emotional inputs. So if I’m scared about a thing – like an upcoming specialist appointment – and my husband is ALSO scared about it, and I come to tell him about being scared about it, there’s a pretty good chance that instead of calming me down and reassuring me, he’ll freak out and tell me off for convincing him that the world has ended. And it can take us a while to try to sort that out, because, unfortunately, I’ll then respond to his fear with more of my own and we have this horrible tendency to spiral. One of the things we’ve learned to do is recognize this as FLOODING, and to catch ourselves earlier and earlier in the spiral and take some time away to calm down and try to understand what happened before regrouping and taking each person’s emotions out separately to look at them and care for them. Sometimes we do this well, sometimes we still do it badly, but that’s definitely improved over the last couple of years.
#3 would be strain on the finances – as I said, we’re pretty fortunate as disabled folks go, in that my husband has a pretty good job, and he has benefits, but being disabled is REALLY expensive – and having four people in the family with a disability, with one in university – is a LOT. Between the needs of everyone’s disabilities I’ve had to work very sparingly over the past 20 years, and am just now trying to get my coaching business to pick up a bit because it’s finally becoming an option to work more myself, but we’ve essentially been on one income for most of our adult lives, and that means that where my husband’s colleagues are buying fancy cars and going on great vacations at this point in life, we’re trying to argue our insurance company into paying for the co-pay on our wheelchairs and trying to renovate our home to make it accessible and trying to psych ourselves up to buy an accessible van so that I can get around again, and that really does create a lot of extra stress.
#4 would be the limitations on what we can do. My husband’s a very sensory-seeking individual. He loves running and biking and triathlon and rock climbing and swimming and hiking and on and on, and I loved doing those things but could never really manage them. Now with the increase in my disabilities, I’m pretty much incapable of any of it. And relationships – they thrive on shared interests and shared activities, and especially for those of us on the spectrum who may prefer having just one or two very close friends, (or in our case, mostly each other as partners) this has made things really difficult.
What we’ve learned in all of this is that the standard ‘solutions’ simply don’t work for us – disability forces us to be creative in ways that we never would have otherwise have to be.
So, if you are part of a disabled family, or live with disability yourself, I’d love to hear some of YOUR creative solutions!
(If you want to listen to the whole thing – sex talk included – you can find it here!)