Since I just started this blog, I was planning to start with a more introductory post but I’ve noticed a disturbing trend in many of the facebook ms support groups I belong to and I think it’s a topic worth discussing. Every day, I see at least two or three stories about partners (and sorry guys, but it’s predominantly husbands) bailing out post-diagnosis. Apparently for some people, ms is a deal-breaker of the ‘in sickness and in health’ part of the marriage vows.
I kind of get it from this side of the fence. Standing by while you watch the person you love struggle daily, losing basic abilities, fighting through pain and fatigue, never sure what further deterioration the future may hold, must be terrifying. When the nerve pain is so bad that nothing can touch it, and the slightest touch is like knives or fire so you can’t even comfort with a hug, must be a special kind of helpless feeling. The mood swings that transform your partner from Jekyll to Hyde to a blubbering puddle on the floor, the sensory overload that makes it difficult to be in busy places without shaking like the Great San Francisco earthquake, the bladder and bowel issues that make any out trip a potential disaster, the list goes on and on.
Some people just don’t have what it takes to be an ms partner. Neurologists have told their patients that the partner fleeing is quite a common phenomenon. Believe me, if I could, I’d run from this bugger too. But I don’t want to focus on the cowards that can’t handle the reality of the monster. I want to celebrate those that have the backbone to stand by their partner as support in whatever way is manageable for whatever weird symptoms crop up on a daily basis. Are they perfect? No, of course not. They don’t always say or do or react in the ‘right’ way. Nobody does. But they stay. They fight the fight alongside and even in the silence of the dark bedroom when you’re drowning in the fatigue tsunami and can’t hold a conversation, you know they’ve got your back.
It’s a delicate balance for both sides. The ms warrior wants to maintain independence as much as possible, the partner wants to help but also respect their partner’s dignity. The warrior pretends to be fine, not wanting to complain or explain the latest in the list of symptoms, the partner sees when things are getting too much and takes over a larger chunk of life’s daily chores. The two things that make it work, when it does, and this applies to all marriages really, are RESPECT and GRATITUDE.
It is inconceivable to me when I hear people say that their partners call them lazy or think they’re faking their ms. I do understand that ‘you don’t get it until you get it’. People cannot possibly understand the power of the fatigue that comes with being chronically ill (especially those assholes who claim to be just as tired), and I wouldn’t wish it on my worst enemy. Not even the doctor who told me my symptoms were ‘just a virus’, but that’s another story. Respect means that even if you can’t imagine what your partner is going through, you believe them innately when they say they can’t do any more. It also means not expecting that caregiver to do things in exactly in the same way you might, which was/is a difficult one for me to manage. 😬
The old saying is ‘love makes the world go around’. While I believe that’s true, it’s gratitude that makes that love continue to grow within a marriage. When two people are genuinely grateful for the other person’s existence and how their partnership improves their life, the love can only grow deeper and richer. One of my life mottoes is ‘it’s all about perspective’. I can choose to focus on the negative things in my life or the annoying things my partner does. I can whine that he doesn’t say just the right thing when I’m in a mood, or stack the dishwasher properly. Or I can filter the focus through the lens of respect and gratitude, recognizing that it can’t be easy to be riding on the ms rollercoaster with me. He never bought a ticket but he’s holding on tight, ready to take the corners and dips and loops by my side. I couldn’t be more grateful or have more respect for anyone.
Respect and gratitude to all the amazing partners who are fighting not fleeing!