Help, My Spouse Has Narcolepsy!
Narcolepsy hit us like a bus. One day I was healthy, then one day, I was not. Over the course of a year, my husband, Jeremy, watched me go from an engaged mom, loving wife, and great friend to someone who could barely leave my bed.
Our entire life changed: job options, finances, marriage, parenting, social life, entertainment. Nothing was unaffected.
Narcolepsy affects both of us
As much as it affected me, I was aware that Jeremy was affected as well. He knew me for 10 years before I got narcolepsy. We were married for 8 when it all changed.
On top of the drastic change to our entire life, he could do nothing to make my narcolepsy go away. As time went on, he also had to give up dreams and desires because I was struggling so much.
Thoughts from my spouse
Jeremy and I have had many conversations about living with narcolepsy. We have talked about the 8 years of our marriage and life before I had it compared to our life now with it. I was curious if he had words of encouragement or advice for others who had spouses with narcolepsy.
The following thoughts come from our many conversations.
Learn about narcolepsy
Jeremy says, “I was a bit judgmental toward my wife at first. I didn’t understand why she couldn’t stay awake. After learning about narcolepsy myself, I realized how much she was actually struggling."
Resist the desire to fix them
"I felt helpless watching Keeley, so I spent a lot of energy trying to force her to do things that might help. Realizing that I can’t fix her was helpful. I could share information and encourage her but I couldn’t actually fix her.”
Work on yourself
“As time has gone on, I realize the importance of my own mental, physical, and emotional health. I saw how hard it was for us when Keeley's health fell apart. I had a healthy fear of my own doing the same. Doing what was needed to stay healthy became very valuable to us."
Realize that you are on the same team
"We are stronger together than we are apart; narcolepsy didn't change that."
Evaluate your workload
"I realized quickly that Keeley was no longer able to do everything she was before. Things were falling through the cracks. I stepped up and started doing as much as I could to help and take responsibility in many areas of our life."
“My wife used to have the most disturbing sleep paralysis episodes. She experienced horribly violating things. It was so hard to hear about. And it was excruciating for her to say out loud. Drilling her with questions was my first reaction and often drove her away. Realizing that simply holding her helped most took me an embarrassingly long time to realize. Now, it is my first go to."
Defend your spouse
“It’s easy to misunderstand people with narcolepsy. Don’t hesitate to defend your spouse."
Educate friends and family
"As a spouse, you have a front-row seat to the challenges. You have a unique ability to help friends and family understand the trials that come with narcolepsy. Do so as often as possible."
You are not alone
Being married to someone with narcolepsy is going to have its own unique challenges. But they can be navigated with patience, wisdom, and love.
There are many online support groups for spouses of narcoleptics. If you are struggling, don't hesitate to connect with others who are in a similar place.
How has your spouse, partner, or loved one dealt with your diagnosis? Join our community and share in the comments below.
What is the hardest part of coping with narcolepsy?