Online Support Groups
I have recently connected with some amazing people through different narcolepsy organizations. There are several social media groups on Facebook, Instagram, and Twitter that I have found. There is one that has made me realize how little in-person support I truly have. Without this group, I would be lost.
I recently started joining online support Zoom meetings that are held by Wake Up Narcolepsy. They have different groups on different nights but the only 2 I have participated in are the young adults with narcolepsy and living with narcolepsy groups. Both were amazing and had so much support. The living with narcolepsy group though had me in tears of joy.
Receiving support and validation
I have recently been dealing with a great deal of stress with my home situation and the people I am living with right now. I opened up in that group and the response I got was something I have never experienced before.
I told the group that I am a volunteer EMT and also in "Firefighter 1" class. They were amazed that I was doing that and told me I should be proud of that, which I am, but never have I had this many people telling me the same thing I try to tell myself. My class, along with having very little support from the people at home, has been very stressful for me lately.
This group told me I should not put up with my family treating me like this. For years, I have been telling myself this same exact thing.
Challenging family relationships
When it comes to family, it can be tough to “kick” them out of your life. It is never something we want to do, but when it starts to become toxic and affects our health, we almost have no other choice. I have personally tried so many times to get this person to understand and nothing has worked.
They have always made it about them and are not willing to try and learn about my narcolepsy. I am at the point where I have tried so hard and it is starting to become exhausting and it is not doing a single thing other than starting an argument. Sometimes you just have to do what is best for you, no matter how tough it can be.
Finding connection I never felt before
I do not know anyone in person with narcolepsy and all I have are the people online. I only had one Zoom meeting with this group and I already feel so connected to them. During that one Zoom meeting, I was treated like an actual human being and felt so comfortable with them. I have never had that type of connection before in my life.
Knowing I have them all makes me emotional, but the good kind of emotional. Most of the people in that group have been diagnosed longer than I have so they have been where I am at currently in the process and have more experiences than I do.
Knowing I am not alone
Having this group truly makes me feel like I am not alone in this. Since that one meeting, so many have personally reached out and just talked with me. It is so nice to just have someone to talk to that does understand what we are going through. We truly are not alone, because we will always have each other.
My advice to you if you want to find support groups that fit best for you is to reach out to others. If you see someone post about support groups, different narcolepsy websites, etc., check them out and reach out to the person who shared it!
You can find more information about support groups on Wake Up Narcolepsy’s website.
Support is personally one of the most important things I have found. Everyone is different, but please know that you are not alone in this journey!
Have you tried online support groups and what was your experience. Share with the community and help others in the comments below.
Do you feel that your doctor understands narcolepsy?