Interabled Relationships & Caregiver Self-Care
Five years ago, I swiped right on Tinder for the last time. As soon as I started talking to Sydney, I knew she was different. She was special. I had never hit it off so well with someone I hadn’t even met yet, and we spent hours talking about our favourite music, hobbies, and much more. Little did I know that five years later, we’d be living in a house we bought together, welcoming a beautiful baby boy into our lives, and getting married!
When I first started talking to Sydney, I made a conscious choice to be as up front and honest about my rare condition, spinal muscular atrophy (SMA) Type 3, as I possibly could. In the past, trying to be something I wasn’t hadn’t worked out so well, so I made the choice to really “put myself out there”. I remember being extremely nervous as I hit the send button on a message detailing my accessibility needs before our in-person date, and fully expected her to not be interested anymore. However, this was not the case. Sydney was inquisitive, curious and genuinely interested in how she could make me more comfortable on our first date. The date went as well as it could, and we enjoyed great conversation over food and drinks, which eventually led to many more dates, until we officially declared ourselves a couple.
During the five years we have been together, we have had our ups and downs just like any other couple. By most standards, I would say that we have a pretty “normal” relationship. However, as an interabled couple, we have had to make some adjustments in terms of the dynamic of our relationship. Not only is Sydney my wife, but she is my main, full-time caregiver – we have never relied on personal support workers. From helping me out of bed in the morning to making sure I am dressed, showered and comfortable for the day ahead, to getting me into bed at night, Sydney does it all. While this may come as a shock to some people, this is just the way we have operated since day one and it feels so natural to us. Also, because of the nature of my disability, I am unable to do many of the physical tasks that may fall to the male in a “traditional” heterosexual relationship. These include things such as cutting the grass and taking out the garbage, with other physical tasks around the house generally falling to Sydney. I like to consider myself the “office administrator” in our relationship, taking the lead on things that keep us organized as a family, such as making sure bills are paid on time, making our weekly meal plans, cooking, making sure all appointments are in order… the list goes on. Between the two of us, I think we are a pretty well-oiled machine!
From the get-go, I wanted to be as up front with Sydney as I possibly could, and that is still how we operate. In an interabled relationship such as ours, I firmly believe that communication is key. This keeps us in tune with each other’s feelings and allows us to really separate the “caregiver” role from the fact we are also husband and wife. It is extremely important that we are honest about how we are feeling and that we work through any bumps together. We believe that every successful relationship involves caregiving in one form or another; ours just happens to center around physical help for myself. That said, it is extremely important that we allow each other the space needed to have time for ourselves and to pursue our own interests and hobbies. This is important so that we avoid what some people call “caretaker burnout”. It is crucial that Sydney gets time to go to the gym, go for a walk, or spend time with her friends and family without me – because just like anyone else, we both need time to recharge and reset. Although our relationship is constantly a work-in-progress, I think we have done a great job of being able to separate our romantic life from our caregiving life, which can be difficult some days. If we have a disagreement or argument, Sydney is still the person who needs to assist me so we tend to just let the little things go, because it’s a lot less fun, both as a caregiver or someone receiving care, when you may not be seeing eye-to-eye.
Swiping right that day was the best decision I ever made in my life, and it has led us to such a wonderful place with a beautiful family that we are building. We never stop learning about each other, or loving each other, despite having no idea what challenges will come our way, but like everything else, we deal with those as they come. As we raise our child, we will show him love, inclusivity and kindness towards others, and I hope he puts all of that back into the world.