Maintaining a healthy relationship can be really hard when one of you is reliant on the other for care. My partner Addz and I have been together for seven years, and for the last five he has also been one of my caretakers. He helps me with personal care, with daily living tasks like cooking and reminding me to take my pills. He carries heavy things (and not-so-heavy things), and assembles my wheelchair when we go out. Despite me needing a fair bit of help these days, we’ve managed to keep the love alive.
While talking about this Addz said, “I don’t see myself as a carer — to me a carer means doing most things for that person all the time. A carer does more than I do.” My personal opinion is pretty different. A caretaker is someone who helps with what the care-ee needs. Addz said, “I know you need help with some stuff so I just do it, it’s instinctual. I know you might fall down so I’m always ready to catch you.”
With us, the “care” instinct goes both ways. We work as a partnership. Each of us has our own skill set — I suck at standing up and I can’t lift heavy things, but I’m awesome at crafty things and I carry everything but the kitchen sink in my handbag… or rather, Addz carries my handbag… but I packed it.
Day-to-day, we try to make “care” activities “romantic” ones instead. I need help negotiating the bath, so instead of just lifting me in and leaving, Addz stays and we share a bath (I do realize the logistics of sharing a bath make it basically impossible for some people, but it works for us). Plenty of activities can be shared.
Addz loves running outdoors. I know he needs his own space but I also know that having shared interests is important. If he’s going running somewhere pretty we’ll go together. He can go off for a run and I’ll wander around with my camera. This works well for us — he gets his own space but then we can talk about our trip on the way home. We get home, both in need of a rest so an afternoon of TV on the sofa meets both of our needs! Fatigue is much easier to deal with when you’re not alone.
Living with variable health can make planning ahead impossible. Addz and I tend to schedule in “time” for each other, we make actual plans at the last minute. On the rare occasions we do make plans, it’s always good to have a backup. Last week we’d planned a picnic, but I woke up feeling bad so we went to a gastropub instead. We parked 10 steps from the door and had comfy seats to sit on. We still got to share a meal but I wasn’t totally knackered and someone else made the food! Addz said, “We’ve learned to accept that if we plan things it might not always happen.” Pushing through isn’t always worth it if I end up in a flare afterwards.
One of our key skills is communication. Even when asking for help I do my best to stay casual. I don’t refer to my family caretakers as my “carers.” They are my family… who happen to care, too.
“Addz, I’ve had a fall and need assistance regaining my feet” simply becomes, “Addz I fell down again, help please.”
“I’ve dislocated my shoulder, please assist me” sounds impersonal, whereas “Addz, my arm fell off” is much more me.
I think there is an element of self-fulfilling prophecy with relationships. If I call Addz my “caretaker” he will eventually become just my caretaker.
Addz says, “If you refer to me as your ‘carer’ then I’ll start to think of myself as your carer, which leaves less room for boyfriending. It’s like a ratio — I’m mostly boyfriend with a little bit of carer, but ratios can change.”
Intimacy is one of the cornerstones of a relationship, and it’s something that can easily be lost when the “caretaker” role starts to creep in. By intimacy I don’t actually mean sex. Sex is great, don’t get me wrong, but I don’t believe it’s an essential part of a relationship. Sex with Ehlers-Danlos syndrome has its own set of problem — dislocating hips, fatigue and pain all put a damper on bedroom antics. Addz is always happy to take things at my pace, even if that pace means no sex at all. This doesn’t mean we aren’t intimate. We kiss and cuddle and never sleep on opposite sides of the bed. This isn’t just in bed — we’ll hold hands while I’m resting on the sofa, we kiss while waiting for the kettle to boil and we hug lots … hugging someone is also a good way to avoid falling over.
This is just a snapshot of our relationship, a happy relationship. I am constantly reminding myself just how lucky I am that when my body fell apart, my relationship didn’t.
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