When I am honest with myself and slow down, I realize that I have a disability.
Narcolepsy, jaw pain, and Raynaud’s disease limit my ability to cope with life everyday.
Without medication, I cannot drive. With medication, I still have to be very careful and aware of my narcolepsy symptoms. Going on long car rides alone is something I strongly avoid. I think the longest I’ve driven on my own was 2.5 hours, and I am often afraid to drive more than a half hour without having caffeine in my system.
When I am not medicated, a person without narcolepsy would have to stay awake 48-72 hours to feel the same level of sleepiness. Even though I now take medication, I can still feel like I haven’t slept for 42 hours on bad narcolepsy days.
I know that number of hours may sound shocking, but it fits my experience. I remember the amount of energy I had before I had narcolepsy. The change when I developed narcolepsy was dramatic.
I have a disability, and I want others to know that. I sometimes hate how invisible my symptoms are. I want to help the people in my life know what narcolepsy is and what living with it is like. I want people to ask me questions about it and to show they care about my disability.
Ultimately, I want to be known and loved as a person with a disability. If you are reading this right now, let me be clear. This post is an invitation, and the invitation goes beyond me.
The invitation is to learn how to fully love someone with a disability. It’s not an easy invitation. It takes courage and humility, but I want to invite people to love me and others in that way.
It’s okay if that invitation feels scary, because I am scared too. Living with a disability has made me feel ashamed, judged, and as if I’m not enough more times than I can count. My loved ones have gotten angry at me when I’ve spoken my needs. Disabilities are inconvenient, difficult to understand, and frustrating.
But I need love the most when I feel inconvenient, difficult to understand, and frustrating because of my disability.
Dear Allison,
We have several things in common the most significant is a profound faith in God. I too live with Narcolepsy and chronic pain.
I personally have never met or even spoken to another person with Narcolepsy. I am 56 years old ,and I have had Narcolepsy since I was in grade school unfortunately I was not correctly diagnosed until 2 months before my 50th birthday.
I have been incredibly moved by reading your blog.
You are obviously a woman of great wisdom, strength and courage.
I would love to communicate with you so please email me. I am really looking forward to hearing from you soon.
Peace be with you always,
Ronnie
Thank you so much for writing I have been looking for a Christian blog written by someone with narcolepsy. I appreciate your post and how you always are pointing back to Christ. It’s super encouraging and this post showed me that it’s ok to slow down sometimes so that in the long run I can do more. Thanks again!
Thanks so much! Your comment is super encouraging! One of my goals for this blog is to connect with others that have similar experiences so it’s great to hear from people like you.
My heart aches for you. More importantly is that I hear you. Invisible diseases are hard for others to understand because “you look normal.” I know it weighs on you and the burden seems hard to bear sometimes. As the mom of 2 type 1 diabetics I feel your plight even though I can’t fully understand. I will tell you , just like I tell my boys, don’t be scared to seek help from others, from counselors. Whatever it takes to help you. One of my sons tries to use humor and sarcasm to cope and another has turned completely inside himself and now has added anxiety and panic attacks to his life. The one thing they both agree on is that it can be isolating. Also that they don’t think anyone truly understands. So I know the weight on your shoulders is similar. If there is anything I can do please let me know. Make sure you take care of yourself.
Hey Patty! I am sorry for just getting back to you. I just made the connection that I actually know you! I’ve gotten comments from several people I do not know on my blog so I didn’t make the connection the first time I read your comment.
But thanks so much! Your words are so kind and compassionate. I actually have been seeing a counselor lately which has definitely been helpful. I also rely so much on Jesus Christ. He suffers with me and carries my burdens which makes the load lighter. I hope you and your sons experience the love and support of truly knowing Christ as savior and redeemer too. It changes everything. And you are so loved.
Thanks again for being a friend to me! We need each other too!
Hi Allison,
I wanted to reach out to you again, with words of gratitude, and to thank you so much for the wonderful way in which you share your faith with others who live with Narcolepsy.
Like you ,my faith is my comfort and strength ,and having this important lense with which to view my life really makes it so obvious to me what a precious gift life truly is!
So ,I wish to encourage you to continue to share your faith and your disability with others, and I assure you you are making a meaningful difference in the lives of others ,which honors and glorifies our Heavenly Father “ABBA!”
Peace be with you always!
Ronnie
Hi Allison,
I was just wallowing in self-pity when I decided to, again, try to find a blog that could answer some new questions. Well I almost instantly found yours. A definite God-thing. Thank you for pointing me to the One Who holds my right hand. I get so upset and driven to find answers that I look everywhere except to my very Father in heaven. I look forward to reading a fellow believer’s journey with narcolepsy. I love your love for Jesus. You are an amazing encouragement to me. I’m 51 and have tried about every medication available and it seems they have a paradoxical effect on me. Caffeine does nothing for me. I also have non-diabetic peripheral neuropathy, RLS, bilateral carpal tunnel, and a couple of other issues. Anyway, please don’t stop writing.
Blessings,
Val
Thanks so much for sharing! I am so glad that the Lord drew you to by blog and that you were encouraged by it! I am encouraged by your kind and honoring words.