Our stories are important. Will you share yours?

Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!

In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in your life and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!

It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.

Your turn! What has Ben’s Friends meant to you?

Hey, y’all. I have been busy lately training to be a team leader and then maybe a manager at my job. But I wanted y’all to know I am so happy I found y’all here :slight_smile: it help’s to know I’m not alone. I am so happy for all that we are and will be :slight_smile:

When I first learned of having narcolepsy, it was difficult, but I didn't know which was more difficult: living with narcolepsy and not knowing it or knowing it. Before I knew about my narcolepsy, people always had a reason to make me feel bad, more like a lazy person that always makes excuses for lapsing in getting some things done or for sleeping too much. Then when I did learn about my condition, people were in denial about it and started accusing me of holding on to it like it was a crutch and claiming I was exaggerating and still making excuses. Plain and simple, there was no support. If you ask me today if anything has changed, I will still say that I do not have that support from family and friends.

I can say that when I found out there was a support group with people like me, I was elated. Then I started to communicate with them and found out that not only were there people like me that was in support, but people that were not like me, but they understood and wanted to know more. That in itself is rare. Most people do not care about narcolepsy and don't think it to be that serious unless you have a severe case of cataplexy (they don't even know what it is called, only that one falls asleep at the drop of a hat like in the movies). Yep, that is how they relate to narcolepsy. They don't understand that the condition comes in many forms and not every situation is the same and they don't care to actually learn about it. Giving them research and links to check out is a waste of time. At least, from my experience it has been.

But when I share my experiences and thoughts with Ben's Friends Living with Narcolepsy, I don't feel alone. I don't feel like I am crazy or completely lost. That feeling alone words can't even explain. Although, I'm not as active as I used to be because I'm not used to keeping up with people on a regular except my immediate family and so many changes have been happening in my life that I forget to share. Heck I barely keep up with each day. I love the feeling that Ben's Friends have my back and I know just who to run to. I've been slowly coming back, because I still don't have anyone to relate to except my doctors and that is still not the same. There is another support group called Narcolepsy Network, but they require a membership payment to tap into their support and resources. I am still lacking in financial stability and fighting for social security. I can't afford membership fees. And to be honest, even when I am able to, I can't imagine leaving Ben's Friends. They were the first to be there and the people are awesome! I also appreciate the research information that I find and the feedback. This is a good thing and I want to see it live for a very long time.

Thank you Ben and friends for what you do best---Being there.

Hi Memedawn! It's good to hear from you, and thank you very much for your post!

"I came to Ben's Friends when my health conditions got the best of me. I couldn't work and felt very isolated. Only a few close friends knew about my illness. I didn't have the energy to educate others because I had to take care of myself, but companionship was part of what I needed. I didn't find support groups in my city. Through the support and friendship of two Ben's Friends patient communities I immediately felt accepted for what I had in common with others. I've read touchingly candid stories and comments by members who have gained wisdom through their trials. I'm grateful for Ben's Friends, my friends here inspire me, and now I volunteer as a Ben's Friends moderator."

Note: Also posted on BF ADD/ADHD

Hi Elodie! Is there a deadline for submitting a story?

No deadline. Stories are always welcome, all year round :-)