Loving a Narcoleptic: A Letter to My Future Love
I am a narcoleptic. I am not like anyone you have ever known. Life with me will be different and can be difficult. If we are going to do life together, there are things you should know first.
Our tiredness is not the same
When you tell me I need more sleep, it hurts my feelings. I do not need more sleep! I need understanding!
When I tell you I am not sure if I am up to something, please do not pressure me. I am trying to make you happy and protect myself from symptoms at the same time.
I know you get tired sometimes, but it is not the same! I feel as though I have been awake 48 hours every day of my life. My tiredness is not the same as your tiredness.
I am not lazy — I am keeping my narcolepsy in check
Canceling plans happens a lot with this disease. I really do want to go and do things like others; however, my symptoms appear when they want and not on my schedule. I may cancel because I do not feel safe, not because I am too lazy to go. Please understand that it upsets me too.
I love having people over to visit, but I can’t entertain a lot of people at one time. There are too many moving parts. I’m not able to give attention to 10 people and host and keep my narcolepsy in check. We can always go visit our friends at their homes or go out to dinner!
I love having fun — just earlier in the day
If I fall asleep while you are driving, please do not wake me! Let me wake on my own and I will be fine! If you wake me and I am not ready, I will be grumpy and out of sorts because my brain has not caught up with me. I will only be asleep for a few minutes, so be patient and know I will be awake and talking soon.
I want to stay up late and hang out with you, but if I do, I will not be the best I can be tomorrow. I must choose between late-night fun and feeling like I am walking with cement buckets on my feet the next day. I am not a Debbie Downer; I love having fun! I just need to have my fun earlier in the day. Can we do that?
Help me find solutions instead of harsh reactions
I know I forget a few things. I try my best to write things down and program reminders on my phone for everything. I mess up sometimes and it makes me feel horrible. I don’t want to pay bills late or miss important events. I may need a little help now and then with remembering.
I didn’t plan on my career ending so young in life. I had expectations of success and financial security like everyone else. I know we must adjust, and it will not be easy. When finances are tight, help me find solutions instead of a harsh reaction. I feel the emotional weight much more than you.
Accept me unconditionally
Life does not pan out like we envision sometimes. I have realized I cannot live my life like others, and I must do things differently. I’ve accepted it and would love for you to as well.
I am a unicorn in a meadow of horses. I am special, unique and require a little more patience and understanding. Will you follow me on this journey and accept me unconditionally?
How would you describe your relationship with your doctor?