Being mad at each other and mad at Parkinson’s disease, too

Developing a chronic, degenerative condition like Parkinson’s disease is a raw deal. It’s also horrible when it comes at the age of 36, as it did for me. You’re entering the prime of life and career, and BLAM! Hello, early-onset Parkinson’s disease.

It’s totally unfair to young spouses who have to be caregivers, too. A spouse may expect to have some level of caregiving later in life — aging parents or a partner later in life — but my husband got slammed with early-onset caregiving the day I was diagnosed.

I’m lucky that not only am I an optimist, as noted by the name of my column, but my husband — an amazing, kind, and caring guy — generally is, too. He’s done a great job over the years keeping me sane and calm through doctor appointments, my deep brain stimulation (DBS) surgery, and countless other Parkinson’s and non-Parkinson’s-related ups and downs.

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Sunny days and blow-ups

But no marriage or married person is perfect, with or without a chronic disease. Despite our generally sunny outlook, life isn’t all puppy dogs and unicorns. My husband and I rarely fight or bicker, but on occasion, we do get furious and upset. And when we do, it doesn’t blow over easily. One event from several years ago taught me how to help overcome these difficulties.

I knew my husband was upset about something and pretty annoyed with me. I kept asking for days what was wrong. He kept saying, “It’s nothing!” However, we’d been together for a long time, and I knew that was a lie. But I kept poking the bear, asking him to tell me what was bothering him, until he exploded: “I can’t be mad at you! It’s not allowed! You’re sick, so I can’t be angry with you.”

As unusual an outburst as this was, I actually started to laugh, which, as you can imagine, really helped his anger! But I laughed because he clearly could be mad at me. He’d been simmering with rage for days. So I said, “Well, clearly, you’re wrong about that. You’re furious with me, but I need to know why, so I can fix it.”

Finally, we both calmed down enough to have a real conversation. And it came down to the fact that we were both upset about what Parkinson’s disease had robbed from us. I lacked energy and couldn’t help around the house like I used to. He was stressed and burnt out by the burden of work, home, and caregiving. I was frustrated that I’d brought this “thing” into our lives, this big, gnarly disease with no cure that was robbing us of time together.

We were mad at each other, but we were also angry at the disease. As we talked more, we discussed my doing more to reduce the housekeeping burden and how we could respect each other’s positions — steps we could both take to avoid future blow-ups. And then I made him promise to talk to me when he was upset. Being mad at each other, alone with our thoughts, wasn’t productive. But we could be mad at Parkinson’s together, which is a lot less lonely and upsetting.

My husband and I still don’t have many big fights, although we do have tense moments. But now we know that one of the best ways to stay on the same team is to talk about our frustrations and our fears, and fight Parkinson’s disease together and not let it divide us.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.