How My Husband and I Navigate Marriage and Chronic Illness Together
Imagine you’re standing at the edge of the water, enjoying the breathtaking view of the sunset, only for it to turn into a nightmare. Your view is now of your “better half” slowly sinking into the water. Of course, as anyone’s reaction would be, you try to help get them out of the water, but it just makes it worse. After numerous attempts, your only option is to sit there and watch them struggle to tread water, barely keeping their head up. That is the reality of what many spouses of someone living with a debilitating chronic disease have to accept.
Helplessness is probably one of the worst feelings you’ll ever feel, especially when it comes to someone you deeply love. It’s like having to swallow a pill 10 sizes bigger than your mouth. No matter how hard you try and how many different ways you try, it’s physically impossible to swallow that pill. You don’t want to accept that nothing can be done, that you can’t fix the problem. As my husband and I have learned, it’s more about diving in the water to float right along with your spouse than it is actually saving them.
As someone who has lived with multiple sclerosis for over 16 years, nearly to the point that I’ve lived longer with it than without it, I can say without any doubt that the love and support from a spouse is the best sort of life preserver ever. While the life preserver won’t completely get us out of the water, it sure makes treading the waves a lot more bearable. We don’t need or want someone to move the mountains standing in our way, we want someone to climb them right alongside us, and then rejoice in the beauty of looking back down.
My life has been and will always be a continuous hike up and down a forever going range of mountains. No matter how tired I become, I have only one choice, and that is to keep trekking up the hills or risk sinking further into the water. While it may have taken my husband and I a while to find a steady pace with our climbs, our greatest climb ever was when we realized what we needed from each other in order to keep going.
While my husband doesn’t feel the agonizing and relentless pain I do, he has to feel it in his heart and soul. He has to look at me, while I’m on the floor, completely paralyzed from the pain, in tears with vomit dripping off my chin claiming that I can’t do any longer and put a smile on his face and help me fight through it. Yet somehow, he still finds me beautiful and wants to walk beside me in life knowing that this will forever be our way of living. Never knowing when or how hard it’s going to hit me, but being ready all the same.
Living with a chronic disease, every day is a surprise, even every hour can change how you feel. If it’s not the pain or the brain fog taking you under, it’s the fatigue. Fatigue is so often overlooked by those who have never experienced it. Fatigue is not being dead on your feet after a long week of constant busyness. Fatigue is waking up after a good 12 hours of sleep to be so drained that it takes everything you have to lift your arm to shut off your annoying alarm clock buzzing right next to your head. Fatigue is wanting to get up and do something you enjoy so badly, but your body can’t move.
My husband once again throws me my life preserver by being able to look at my face and body and know I need a break. He has no guilt or burden, as I often do, when telling others to take a hike because I need to rest. He doesn’t make me feel guilty for having to nap numerous times a day or having a day go by when I didn’t complete anything at all. While he has no idea how the fatigue feels, he knows the results of pushing through the fatigue and happily accepts my need for sleep.
The toughest emotional issue many with chronic illness face is the stigma and judgment from others. My husband never questions or doubts me about how I’m feeling because he knows. He lives it with me. It’s as much his struggle as it is mine. He gives me empathy, not sympathy. I return the gesture with honesty. I remove my mask and allow him to see me at my worst. While that can be very raw for someone with an, at times, invisible illness, I’ve learned that it’s more comforting for a partner to see it firsthand. Instead of constantly trying to guess and worry about what we’re hiding behind our facade, they see the same smile everyone else sees and know what is hidden behind it.
Losing your independence can be soul-crushing for many; but as I’ve learned you’re not losing, you’re gaining. You’re gaining a piece of someone else, an extra shoulder to lean on, a leg to stand on, a mind to see things with and a soul to soar with. My husband deserves the title of hero just as much as Superman himself. While he claims that I’m the strong one, what he doesn’t know is that I gather my strength and courage from him. While neither of us enjoys having this unrelenting third wheel in our relationship, the one thing we’ve learned through our journey is that with love and support, we can make mountains seem like anthills.
Getty image by Noel Hendrickson.