Updated: Jul 5, 2019
There are any number of ways to be a better spouse regardless if your partner is disabled or not. You can devote more time to them, be more thoughtful, help out more around the house, plan more activities together, and the list goes on.
But when your partner is disabled there are additional things to think about. Different levels of assistance and consideration are required. I'm only listing my Top 5. The list can go well beyond that and I look forward to your comments and further discussion on this topic in our forum.
1. Become a Subject Matter Expert on Your Partner's Disability. My wife has Multiple Sclerosis. She's had several MS treatments - each with a more confounding name than the last: Tysabri, Lemtrada, Ocrevus. And those are the brand names! Four years ago I had never heard of the word myelin. Now I can tell you all about it. Here's the short version: The myelin sheath protects your body's nerve fibers. When the myelin sheath is healthy, nerve signals are sent and received quickly. But if you have MS, your body's immune system treats myelin as a threat. It attacks both the myelin and the cells that make it. When that happens, the nerves inside the sheath can be damaged and all of a sudden parts of your body fail to respond to the commands sent by your brain. Here's the VERY short version: myelin is really important and the entire MS community is waiting for someone to figure out how to regrow or repair the myelin that has been destroyed. Why is it important that I know that? Because I'm sitting by my wife's side at every doctor visit and I need to understand at least the very basics of what he is telling us. We need to somewhat speak the same language. Get as educated as you can.
2. Laugh at Everything. And I mean everything. Helping your spouse tie their shoes or pull up their pants? Laugh about it. Do they have difficulty eating? Maybe they drop a lot of food on the floor? Don't degrade them. Laugh with them. There is gold in every ridiculous and trying circumstance you find yourself in. Make the choice to smile and laugh before settling for frustration. Your spouse probably feels like a burden at times and your impatience certainly won't do anything to help that. Work on laughing more together and watch as everything suddenly improves.
3. Walk in Their Shoes. Or Sit in Their Chair. It's very easy to forget about the daily struggles that your partner goes through since it sadly becomes the norm. Days and years pass, and in some cases conditions worsen, but in all cases life happens and we roll with the punches. In my case, I'm so used to doing certain things for my wife that I forget what it must be like for her not to be able to do them. Things that a person without disabilities completely take for granted - like the ability to put on your own shoes - can be a daily source of frustration. Those tasks also serve as a constant reminder of their condition. Each time my wife tries to put on one of her own shoes it's another opportunity to think "why did this happen to me?" We, as spouses and partners, should never forget that. Sit in their chair. Do your best to fully experience and understand their struggle. Before thinking about your additional workload and becoming frustrated by your circumstances, think about the daily grind and the mental battle your loved one with disabilities is going through.
4. Don't Consider Yourself a "Caregiver". As my wife's condition worsened and she began to depend on others more and more, it was clear she was worried about our roles as husband and wife transitioning into…something else. She told me one day while crying that she never wanted me to be her "caregiver". I immediately shut that down. Why would I need an extra label to describe my relationship to my wife? I reject the label. I'm her husband. End of story. If my wife broke her leg, and she was in a cast for a few months, would I need to identify myself differently? Would my behavior change because my wife was someone with a temporary disability? Of course not. Then why would anything change if that disability happened to be permanent? I know it's just a word, but words matter, and in this case it's adding a new role - and a new identity - into the relationship. Husband is enough for me.
5. Recommit Your Relationship. Multiple Sclerosis is not a predictable disease. At one point in 2018 my wife, on top of all of her other motor-function and mobility based disabilities, was also forced to wear an eye-patch for a stretch of 5-months. Her vision had been impacted and the double-vision was making her nauseas on a continual basis. We saw several eye doctors for treatment, but much like everything related to MS, there was nothing they could do. Fortunately, for now, she is no longer wearing an eye-patch, however that issue can crop up at any time. Maybe this afternoon, maybe in two years, maybe never? Who knows? But my wife thinks about that. She worries about what motor skills she might lose down the road. She worries about her next significant flare-up and what abilities might disappear along with it. The last thing she needs to worry about is our relationship.
It's a sad truth that people with disabilities are more likely to get divorced. That stems partly from an increased financial burden and an implication of a decline in future income. However, I'm also sure that there are many people out there that simply can't handle the added obligations. I made it very clear to my wife early on that I would be by her side forever - through it all. I'm not trying to paint myself as any sort of "hero" by saying that, it's simply what I chose to do. I couldn't think of anything more important upon her diagnosis than to reassure her that I would always be there and that we would deal with her disability together. If you know your partner with a disability is questioning your commitment I would do everything to remove that doubt.
I would love to hear some of your top tips to be a better spouse. Leave a comment below or post to our Forum.