Acceptance, Forgiveness, and Loss
I want to share something very personal with all of you. It has taken me many years of soul searching to learn how to forgive people in my life who do not understand my narcolepsy with cataplexy diagnosis. I have had family members and friends drop out of my life because they could not understand my needs and struggles.
Losing control of my mind, body, and emotions
When I was younger and not yet diagnosed, I would overcompensate and put on my fake face and act like things were great. However, all the while, I was suffering inside.
I look back and wonder how the heck I managed to raise my children and keep everything clean and organized as much as I did. Once my narcolepsy became prevalent and out of control, I started to stay home more.
It was hard for me to explain what was happening and that I was not in control of my mind, body, and emotions. I took a step back from everything and I was misjudged for that.
No support when I needed it the most
The lack of sleep affected my decision-making and my desire to follow up on important things. I started canceling events I would normally attend and would make up excuses at the last minute to avoid going. Of course, this made me feel guilty and “less than.”
When you feel down about yourself, you need encouragement, support, and understanding. This usually comes from your close family members or your closest friends. I wish this were the case for me. Unfortunately, my experience with my siblings and others did not turn out that way.
Feeling hurt and judged
It is not only embarrassing but also hurtful to be judged by your family. Once a seed (opinion) is planted, it grows, and some people choose to believe in the juicy drama instead of the simple and basic truth. It is almost like they bond together and give zero thought to the damage they are doing to the person who needs them the most: diagnosis or no diagnosis.
My sleepiness was misread as laziness
When canceling on an event, it is simple – I am too tired and worn out, and my mind is foggy. I simply cannot leave the house. For someone with cataplexy, I can tell you that it is scary to leave.
It takes a strong mind to ignore the horrifying thought of falling or injuring oneself in public. This gets misread as being selfish, lazy, rude, or whatever explanation someone might come up with.
If I fail to respond on the phone or return calls, it is because I am asleep or just cannot get to it yet. I feel if they would just STOP and take a moment to research narcolepsy, that it could explain a lot to them. I can only try to explain things so many times. I had to accept that this battle would be mine and mine alone.
Thankful for my understanding husband
I have been blessed with a husband who is understanding and who has managed to learn as much about narcolepsy as me through the years. It hurts me to know there are many people out there who have experienced loss as I have and who are still trying to find someone to understand.
Learning to advocate for yourself
It is important for those of you in this situation to understand that it is not YOU. Whether it is your family, friends, coworkers, neighbors, or teachers. If you are being treated unfairly, you need to be your own advocate and speak up for yourself. It may result in a positive response, or it may cause negativity.
I spoke up for myself and refused to be treated badly, and the result is that I have lost many people I assumed I could count on. Some of these were sisters, brothers, cousins, various friends, and one parent.
It gets easier over time
It has gotten easier over the years, once I realized it was not ME! This made it possible for me to forgive myself for letting go. How could I keep chasing these relationships when it was more hurt than love?
I understand that there are many people with narcolepsy out there with great support. However, I believe there may be more without. Especially people undiagnosed and who have no clue what is going on with them. I have been there, and it is not easy!
If you believe you have narcolepsy or any other sleep disorder, please go to your doctor and start the process of getting answers. There are medications, life changes, and support groups that can help you feel whole again. Nobody deserves to go through this journey alone!
Where are you in your narcolepsy diagnosis journey?