Broken Expectations

Family can be your biggest support system, and they can also be a huge obstacle.

Wouldn’t it be great if it was like it is on television? You find out a diagnosis and everyone rallies together in support of you. They make you feel all warm, fuzzy, and safe. This may have been the reaction in your family; however, it sure wasn’t how they reacted in mine.

My narcolepsy diagnosis hit me like a ton of bricks

Narcolepsy is already confusing enough with all the quirky things we go through. We go through life knowing something is "wrong" with us, all the while not being able to figure it out. Many primary care doctors do not come across narcolepsy very often, so it usually takes years to get an accurate diagnosis. During this time, we may make bad decisions for ourselves or others because we do not know what is going on!

When they told me I had narcolepsy, it was like a ton of bricks hit me! I felt like I just received the answer to questions I had been asking all my life. Why am I like this? Why do I feel like this? Why did I say that? Why can't I stay awake? Why can't I do things others do so easily?

My father's reaction made my narcolepsy worse

I envisioned telling my family and all of us having an "ah-ha" moment together. This was not the case.

Compassion is not something everyone is capable of. I’ve learned this the hard way. It felt as though they didn’t believe me. My father was so casual in his response and did not bother to ask a single question. He made me feel like I was telling him random information and that it was not a real condition.

This hurt me to my core. The support I had longed for and needed was surely not going to be given by him. His reaction made my narcolepsy worse, and I had a very hard time dealing with him after this point. Within 1 year of my diagnosis, we ceased to communicate.

I cannot be responsible for other people

I went through a hard time trying to figure out how to live with narcolepsy, and my trials and tribulations seemed to be inconvenient for my father. It has been over 10 years since I have spoken to him. One day he just stopped calling.

I had done nothing to this man. I have never been disrespectful to him or done anything to warrant a parent just dropping their own child.

It took a few years of therapy to accept the fact that this was on HIM! I cannot be responsible for other people not wanting to take the time to understand. When someone you love and look up to hurts you like this, it can make you second-guess yourself. "Do I REALLY have Narcolepsy? Am I doing something I’m not supposed to?"

Setting boundaries to protect our emotions

I wish things were different and we were one big happy family, but I have lost that opportunity. It has been too long, and I have worked on myself too much to subject myself to that kind of drama.

Stress can be a major factor in how our narcolepsy affects us. Feeling like I must protect myself is not a great feeling. Unfortunately, I feel like I need to keep away from judgmental people and others who make me too emotional. This is just the way it is for me now.

I have built a loving family around me

If your family or friends make you feel bad about yourself, let them go! You cannot be the best you can be if you are being told you are less than. This causes a big circle of resentment and mental battles to get through.

Sometimes we must make sacrifices for the greater good. No matter the relationship, you must put yourself first if you are being hurt.

After many years of feeling a loss, I have built a loving family environment around me. I am finally seeing the love and understanding I needed for all those years. Family is chosen by my heart now, not by who I share blood with.

Have you faced a lack of support from family and friends in your narcolepsy journey? Our community is here for you. Share an experience with us in the comments below, or consider starting a discussion in our forums.