Narcolepsy Nerd Alert: Narcolepsy and Relationships

Tips For Navigating Relationships

1. Compromise creatively

Before fully saying “no” to an activity that’s meaningful to your partner, try to get creative. Brainstorm ways in which you can still participate while being mindful of symptoms.

2. Laugh!

Humor can offer levity in even the hardest of times. Life with narcolepsy is challenging, and so are relationships! Laughing about it together won’t change this, but it can make it more bearable.

On days when symptoms are worse and you’re already feeling bad for canceling plans or being behind, laughing just makes everything a little bit better. Most of the time it’s me looking at him and saying, ‘Why am I so tired?’ and him responding, ‘You have narcolepsy.’”

– Lindsay

3. Embrace flexibility

The challenges narcolepsy brings will likely change over time based on what stage of life you’re in. Accept that you’ll need to learn to cope with new obstacles as you (and your relationship) evolve.

4. Plan ahead, together

When you are feeling up to it, plan together for times when nobody in the relationship has much energy.

5. Troubleshoot cataplexy together

Share your triggers and discuss how best to plan for them. For example, if your cataplexy is triggered by laughter, your partner can encourage you to sit down before you exchange jokes or funny stories.

If I’m going to have what feel like arguments or hard conversations, I ask to have them seated because I know it will trigger my cataplexy.”

– Lain

6. Consider red flags

Did your date make an offensive comment or suggest a “cure” when you disclosed your narcolepsy? If you don’t like how they respond to it, be open to the idea that they maybe aren’t the best fit for you.

7. Create transition time after naps

To avoid hurt feelings or misunderstandings after waking up from a nap, consider initiating a rule: don’t interact with each other for, say, 30 minutes after you wake up from a nap.

Sometimes I wake up in a very negative mood, so it was a much better fix for us to just live around each other for 30 minutes and give myself time to transition.”

– Julie

8. Talk about it

Have open, honest conversations with each other about your feelings around narcolepsy. You might not naturally think about the feelings and concerns of your partner without narcolepsy—and vice versa.

9. Develop a support network

Expanding your support network beyond the relationship helps take pressure (emotional support, childcare, etc.) off of each partner.

10. Recognize what narcolepsy offers you

Without negating any of the serious challenges of living with narcolepsy, many people find it beneficial to think of its “silver lining” in their relationship (i.e. growing closer by learning and growing together).

Both of our kids told me, ‘You know, I really admire Dad for what he has done and coped with, with narcolepsy. I can’t believe how he has managed it as well as he has.’ They don’t feel short-changed. They’ve learned that he’s strong and able to cope. Jokes get funnier because of Bob’s cataplexy when we’re all together. There’s acceptance there.”

– Margaret

11. Remember: Narcolepsy affects each partner in a relationship.

Helpful Analogies

Some people with narcolepsy find that communicating their energy levels to their partners using analogies and metaphors can be very effective.

The Spoon Theory

The spoon theory expresses the idea of limited bandwidth using “spoons” as a unit of energy. It shows how chronic conditions impact one’s ability to complete everyday activities and could help you explain your limits and boundaries. You might say, “I just don’t have the spoons for that right now.” Read more about “The Spoon Theory.”

Being able to say that I didn’t have the spoons to do an activity helped because it wasn’t always exactly about a specific symptom, just more that I had limited bandwidth.”

– Julie

80/20 Plan or Gardener/Garden

These analogies represent the give-and-take in relationships. The Gardener/Garden approach illustrates how a Gardener provides support and creates a safe environment in which the Garden can grow and bloom, with the understanding that the roles will swap.

In the 80/20 plan, one partner is at 80 percent, and another is at 20 percent. The partner at 80 might need to provide more support to the partner at 20. Sometimes, everyone might be at 20. It helps to plan ahead for this.

You’re allowed to throw up the flag that says, ‘I need help,’ acknowledging that you’re also going to be the person to catch the flag when the other person needs help.”

– Lindsay

For more information on this topic, download the Narcolepsy and Relationships toolkit!

Narcolepsy and Relationships: Listen or Watch!

The Narcolepsy and Relationships broadcast originally aired on February 14, 2024.

Meet Our Guests

Taylor Dillon is a Filipina-American NERD who loves hiking and dancing in Los Angeles. She was diagnosed with narcolepsy at age 18, and now creates educational resources, the Narcolepsy Nerd Alert toolkits with Project Sleep. As a speaker with Project Sleep’s Rising Voices program, Taylor shares her story to increase public understanding of narcolepsy and decrease stigma around sleep disorders.

Lindsay Scola is an entertainment impact strategist and outdoor enthusiast living in Los Angeles. She was diagnosed with narcolepsy at 35 and is now a speaker with Project Sleep’s Rising Voices program. Lindsay shares her story of experiencing mysterious symptoms and advocating for her diagnosis to help others with sleep related issues get answers and seek the treatment they need.

Bob Cloud is a retired lawyer living in Northern Vermont. He grew up in Ohio and married an Indiana girl, Margaret, with whom he has two children. His excessive sleepiness, cataplexy, and related symptoms appeared at age 33, during his first year of night law school. Bob practiced family, criminal, and general law for 30 years, during which time he learned to live with narcolepsy. As a Rising Voices speaker, Bob shares how supportive family, creative doctors and pharmaceutical providers, and understanding friends stood by him as a husband, father, lawyer, patient, and occasional fisherman with narcolepsy.

Margaret Cloud has been married to Bob for 52 years. Following a career of 30 years in clinical laboratory leadership for major medical centers and national labs, she moved with Bob to northern Vermont. Margaret’s insights into supporting a spouse with narcolepsy raise issues not often discussed by individuals, families, and professionals.

Jeff Discount is a father of three who enjoys a career as a sales engineer and business development consultant, and has a passion for building both his physique and meaningful relationships. He was diagnosed with narcolepsy at age 40, which provided considerable challenges in maintaining high levels of fitness and balancing important facets of his life. Jeff encourages other people with narcolepsy to connect and learn from each other, and is thrilled to share some of the ways he has overcome his own challenges with this neurological condition.