My Condition, My Choice!
Last updated: February 2022
“You look tired, is everything ok?”
This is a question that most of us living with narcolepsy are probably tired of hearing - especially in the workplace. Recently I was talking to a friend of mine and venting about how frustrating it can be to be asked this time after time and always have to reply with, “I’m fine, thanks!” With a confused expression, she asked me why I didn’t just say that I have narcolepsy.
After many attempts at offering the Reader’s Digest version of a complex problem, I realised I was getting nowhere. Keeping my condition to myself seemed to suggest to her that I was embarrassed by it.
If only it was that simple.
Why would someone not disclose that they have narcolepsy?
In my personal experience, there are more reasons to keep our condition to ourselves than there are to share.
The top 3 reasons for me are:
The potential of being mocked for our condition or even losing a job opportunity is a fear we live with constantly.
Ignorance pertains to numerous issues, such as the hassles we face in explaining narcolepsy repeatedly, the exhaustion of having to repeat this explanation, or even just reminding people that we still have "that chronic illness I told you about." Dealing with ignorance is an added stress I think we all wish to avoid.
Although most of us probably wish this wasn’t a reality, it is one we really cannot avoid. The changes in how the world looks, analyses, judges and deals with us are undeniable. This, unfortunately, often pertains to the ones we love most.
Disclosure can be empowering, and it can also come with regret
The decision to tell, or not to tell, people about our condition usually follows a curving line rather than a linear one.
There are times where I feel strong and empowered, which usually gives me the confidence to share openly with anyone I meet. But that surge of courage never lasts too long. It’s usually followed by uncertainty and regret. Did I do the right thing? Should I have kept it to myself? Are they going to act differently with me now? A multitude of questions rush through my head, and the feeling of deflation takes over me.
This cycle usually repeats itself every time I share my condition with someone. The repetitive cycle wears you down after a while and leaves you utterly exasperated.
Choosing to share that I have narcolepsy is my decision alone
Lately, however, I think I have become so aggravated with this inability to decide that I unintentionally came to a conclusion. Firstly, in anything in life, it’s important to live your life only for yourself. No one should have to justify the decisions they make. What people think or say about you does not matter. At the end of the day, only you know your pain.
This leads me to my current standing: My condition, my choice!
Whether I choose to share that I have narcolepsy or not is a decision I alone get to make. I have come to understand that, for me, the best way to see things is on a case-by-case basis. If I feel it’s relevant, or I simply want to share this information with someone, it is up to me alone. I should not have to feel as though wanting to keep my personal affairs private automatically deems this as “being ashamed” of my condition. It does not.
Everyone has a right to keep certain aspects of their lives private, no matter what it is.
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