How Diagnosis Affected My Relationship

At 24 years of age, I decided to embark on a new adventure by leaving my life in the United Kingdom and moving to southwest Africa.

Although initially, I did not plan on staying longer than a year, 3 years later, all plans to return to London were long forgotten when I met my now ex-boyfriend, Daniel.

Both naturally social creatures, we made the most of our free time and together. We were inseparable.

Life is not always as it appears

To the outside, my life probably seemed dangerously close to perfection. I had a great job, my apartment, a healthy social life, and a boyfriend who doted on me.

No one knew, not even Daniel, that no matter what I tried or how many hours I slept, I was at my body's mercy whenever slumber assailed me.

Bewilderingly, it took 12 years of suffering strange symptoms and 2 almost life-threatening experiences to force me to seek help. After almost falling asleep at the wheel and setting the house on fire... I no longer trusted my body and my mind even less.

I thought life would be better after my diagnosis

When I finally received my diagnosis, I was excited to share this with Daniel. I felt relieved that I didn't have to hide this part of me anymore, especially from a key person in my life.

Equipped with medication for the first time in my life, I felt confident that my problems were finally over. I thought everything would be better. It wasn't. I thought I would feel normal. I didn't.

Struggling with unpredictable mood changes

My mood began to change abruptly and unpredictably, and I started to have regular bouts of palpitations. At times, the mere sound of my boyfriend's voice would irritate me for no reason. The irritation would eventually subside, only to be replaced by guilt. Back then, I wasn't aware of the psychological effects some medications can have.

It impacted my relationship deeply because in trying to respect my newfound limitations, I failed to anticipate that these would inevitably affect his life too.

On nights out, I would now always ask him if we could leave by midnight at the latest and, he would always agree. However, we hardly ever left before 5 in the morning. After a while, I stopped attending events with him.

Our lives drifted apart

Eventually, our lives outside the house became entirely separate. He no longer invited me to places, usually claiming that he just assumed I wouldn't want to go.

I hid it well, but internally I was struggling. I had started another new set of medications. This meant an aggressive return of the same familiar side effects (palpitations and mood swings) and an introduction to even more (loss of appetite, hallucinations, and insomnia).

The end of our relationship

I tried to explain my new reality to him many times, but looking back now, how could I possibly explain something that I barely understood myself? I felt alone in my relationship and believed that he seemed happier staying out than being at home with me.

Almost 5 years into our relationship, it came to an end. It took me a long time to understand how much my diagnosis affected my relationship and even longer to accept it.

New patients need information and guidance

These days I truly believe that if I had been given some form of guidance following my diagnosis, then I might have had more awareness of how narcolepsy would impact my life.

In my opinion, it is fundamental that newly diagnosed patients are provided with information and support that will prepare them to manage the changes to their personal life in the healthiest way possible.