When Friends Understand… or Don’t

The longer I live, the more friends I have. (Not all at once, though.)

My social life started suffering when my narcolepsy onset. There were many years where I just didn’t have friends.

Transitioning from a mostly able-bodied person to a person with severe type 1 narcolepsy meant that my old friends were suddenly incompatible with my new life.

Losing friends because of my narcolepsy

I’d been a driven, type A person with lots of type A friends. But suddenly, I couldn’t keep up with my friends anymore. Friends fell away, dropping out of my life like flies. I nursed feelings of betrayal and abandonment. It wasn’t an easy transition, to go from someone with a large social circle to someone with no real friends.

Living without friends was my reality for a while. Since I was suffering from severe, partially untreated type 1 narcolepsy, I had no energy to go out and find friends. My job position ended due to my narcolepsy severity. I was exhausted, emotionally and physically. So I stayed at home.

Finding support and community with other chronically ill people

The longer I live with narcolepsy, the more chances I’ve had to make friends with people whose lifestyles align well with my own forced limitations. That is, I tend to gravitate towards chronically ill people, who like to do things but have to take breaks. This isn’t always possible, though, since not everyone walks around with signs saying, "I’m sick, let’s be friends!" (Although this might make my life easier, it certainly isn’t a practical solution.)

One way I’ve been able to find chronically ill friends is through support groups. For example, I currently co-facilitate Wake Up Narcolepsy’s support group for LGBTQIA+ people with narcolepsy. In doing so, I get to meet every week (very often with the exact same people) to discuss narcolepsy and its impacts on our lives.

This support means the world to me. It is empowering to watch other people overcome similar obstacles that I face in my own life. And participating in this group has landed me with many different friends, from all sorts of different backgrounds, who all know what it’s like to live with narcolepsy. We are all different, and the same.

I should be safe to be myself in relationships

Although my friendship situation has improved in recent years, I still struggle to make and keep friends, largely due to my narcolepsy. I can’t tell you how many relationships have suffered due to people being unwilling or unable to accept or understand my condition.

"You can’t just blame everything on your disabilities," one friend recently said to me.

Though we’ve worked through conflict in the past, for me, this attitude spells the beginning of an end. I have had to learn to hold fierce boundaries when it comes to my disabilities. I’ve spent too long fighting against the world — to make it see me, accept me as I am, and make spaces accessible for me. I am not willing to fight this fight in relationships, where I should be safe to be myself. That is the bare minimum for any relationship, in my mind. At least, any relationship that I am willing to invest in.