Somewhere We Belong
Let me begin by stating that I truly am proud to belong to this community.
I have many friends who live with a variety of different conditions and, therefore, am very aware that not every community is as supportive and accommodating as, I am happy to say, I have found the narcolepsy community to be.
Nevertheless, we humans seem to be intolerant to living in harmony, even though we all seemingly advocate for it.
We know what it feels like to be different and misunderstood
As people who know what it’s like to be different, we should know better than to judge others if we have never walked in their shoes.
Surprised by unpleasant situations in support groups
As a patient advocate and active member of a number of support groups on social media, I have (unfortunately) witnessed situations that I had not expected to see.
I confess that seeing unpleasant comments and treatment within a community of people that all, at some point, have (probably) suffered the same discrimination, disregard, injustice, and at times even ridicule took me slightly by surprise.
Digital blows hurt too
Unfortunately, it seems that it’s unavoidable in all walks of life.
I think it’s important for us to all be more aware of how our words and actions can affect someone, regardless of whether the blow is delivered physically or digitally.
Support networks are like relationships
Although we have all been placed under this same category (narcolepsy), it is not a condition where one size fits all! There is no gain in competing over who has it worst or better. We all have our own struggles that affect us in entirely different ways.
It’s impossible, as we already have learned from experience, that unless you walk a mile in someone’s shoes, you cannot possibly know what those shoes feel like.
In my eyes, being part of a support network is like being in a relationship – you both give, and you both receive. It's an equally beneficial partnership.
Protecting our safe zones
Like I said, I love this community as a whole and have been lucky to get to belong to a largely supportive, positive, and embracing group of people. This I am so thankful for.
We are all human, and therefore imperfect. Myself extremely included! We won’t always agree, and we won’t always like everyone we meet simply because we share a similar condition.
I just think that it’s good for all of us to remind ourselves that with so many battles we already have to face with the people we have to defend ourselves against on a daily basis, keeping our safe zone, safe...could save us from additional and, most probably, unnecessary battles.
Do you feel that your doctor understands narcolepsy?