Tips for Talking to Others About Your Sleep Disorder

So you have been diagnosed with a sleep disorder. You may wonder how much you should share with family, friends, and coworkers or whether you should mention it at all.

Talking about any health issue is a personal decision. How and when you share medical information may also depend on whether it impacts your home life, friendships, or work. You should do what feels comfortable to you. If you are going to share some details, here are some tips for talking to friends, your boss, or loved ones about your sleep disorder.

Prepare what you want to say

It can be tough to open up to friends and family about your condition and how it impacts your world. But, sharing how you feel both physically and mentally, and what they can do to help, can make your life easier. When others understand what is behind your daytime sleepiness or irritability, they can be more supportive.

Learn more about your sleep disorder first. If you educate yourself about your sleep disorder then you can educate those around you. If you need to ask for accommodations at school or work, read about your legal rights. Be prepared to discuss the specifics of what you need to be productive. A teacher or boss may assume an accommodation is complicated and expensive when all you need is:¹

• Permission to stand in the back of the room during meetings or class
• Flexibility to move certain tasks to times of the day when you are most alert
• A standing desk or the ability to walk around the office when sleepy

When telling others about your sleep disorder, be sure to let them know whether you are okay with other people knowing. Finally, be prepared to answer the question: How can I help? What do you need?

Having an invisible health condition is hard

Everyone has trouble sleeping at one time or another, but a sleep disorder is more serious than that. Despite this, other people may not understand how seriously your sleep disorder may impact many parts of your life. Communication can help.

Talk with your loved ones about the very real ways your sleep disorder impacts you. Some examples might include:

• If I fall asleep in the middle of you talking, it is not because I am bored or rude. I have narcolepsy and one of the symptoms is that I cannot help falling asleep in the middle of things.
• Please encourage me to wear my CPAP mask every night. It will help me control my blood pressure, weight, and heart disease.
• I love our coffee dates but caffeine is making my restless legs worse. Can we go for a walk in the park instead?
• I have not slept more than 4 hours a night for a week because of insomnia. It would help me fall asleep if we could turn down the thermostat and turn off the TV earlier in the evening.

Be prepared to explain the details you are comfortable sharing but do not feel pressure to make your life an open book.

Not just harmless snoring or napping

People around you may think that your daytime sleepiness, fatigue, or problems concentrating are the result of laziness if you do not explain your sleep disorder.

Like other invisible (or mostly invisible) health conditions, people may react with words that imply you are exaggerating, “But you look fine.” Or, they completely fail to recognize your distress, “No wonder you are so productive. You never sleep!” or “I wish I could fall asleep anywhere!” They may also try to offer advice they believe is helpful such as telling you to go to bed earlier or to have a drink before bed, not realizing these suggestions are poor sleep habits.

For instance, the snoring of sleep apnea may seem so common that other people have a hard time understanding it can cause serious health problems like heart disease and diabetes. It may help to invite a loved one to your next doctor’s appointment. Your doctor can reinforce the need for lifestyle changes such as wearing your CPAP mask every night or exercising more.

Likewise, the uncomfortable feelings caused by restless legs syndrome (RLS) cannot be seen by others. This can make it hard for others to realize why it keeps you from falling asleep or tired the next day. Opening up to others allows you to find out if runs in your family, and what treatments have worked for them.

Once you become more comfortable sharing your needs, you may find those around you a powerful source of support.