Meet Our Advocate - Bella Kilmartin
At Narcolepsy.Sleep-Disorders.net, we are thankful for our amazing advocates who share their experiences of living with narcolepsy. In our advocate spotlight interview series, we get to know our advocates better and find out why spreading awareness of narcolepsy is so important to them.
What is one thing you would like to share with the community?
I’m struggling to think of something if I’m honest so I will share a few words of wisdom that have helped me recently. Coming to terms with my diagnosis is something I have struggled with. Some days, you may be able to accept your diagnosis and your new reality. Other days, you may feel like you are back at square one and want to scream and cry at the fact that this is now your life.
It’s important to remember that acceptance is not a linear process. It may be 3 steps forward and 2 steps back and that is completely normal.
What does advocacy mean to you?
For me, advocacy means sharing my story and experiences of narcolepsy to help others with narcolepsy feel less alone and to know that there are people out there who understand. It is about being a voice for people with narcolepsy.
Through sharing my stories and experiences, advocacy is raising awareness of narcolepsy so people better understand the condition and reduce the stigma associated with it.
What do you wish someone had told you when you were first diagnosed with narcolepsy?
That having narcolepsy is nothing to be ashamed of. Join support groups (e.g. on Facebook) as these are a great way to get support from people who know what you are going through and will answer so many questions that you may have.
Another thing I wish I was told is that it is okay to accept help and accommodations. I went to university just after being diagnosed and struggled through without accommodations mostly I felt that it was admitting defeat and because I was ashamed.
What brings you the most joy (especially when you’re feeling down)?
Without a doubt, my 2 beautiful goddaughters. Tillie is 4 years old and Mea is 18 months old and they never fail to make me smile. Spending time with them is extremely precious and always brings me so much happiness.
Also, a cuddle from Tala, my gorgeous Siberian Husky, is a great instant little mood booster!
Where do you find support?
For narcolepsy-specific support, I tend to turn to Facebook groups that I’m part of (i.e. Narcolepsy in the UK) and the Health Union community. Also, since recently starting up a narcolepsy-related Instagram I have found great support on there.
I do have very supportive friends and family but support from people who understand what you are going through is unmatched. Especially if I have any narcolepsy-related questions.
What is the last show you watched that you enjoyed?
Firefly Lane (100 percent recommend)
What is one meal you could eat for the rest of your life?
Oh gosh, I’m a real fussy eater, so probably some form of chicken and potatoes haha.
What is your favorite quote or saying?
"Courage isn’t having the strength to go on, it’s going on when you don’t have the strength." – it changes all of the time but this is my current favourite.
Do you relate to Bella's narcolepsy experience? Say hello to Bella in the comments below!
What is the hardest part of coping with narcolepsy?