I Don’t Want Your Medical Advice

I’ve had so many people give unwelcome medical advice about my narcolepsy symptoms.

Unwanted advice

“Try going gluten-free! My gut flora was being destroyed by gluten, and once I stopped eating it my energy levels came back!”

“You should try running. It helps me be more energized throughout the day!”

“Going vegan made me feel better! I bet it would help your narcolepsy symptoms, too!”

“You should really try stopping your narcolepsy medications; they’re probably what’s been making you so tired!”

I’ve heard each of these, and more! In the past I’ve simply nodded along quietly, asking myself if I was the problem. Am I just not trying hard enough? Questions like these would circulate internally until I felt myself hating myself and my condition.

Since becoming more active in the narcolepsy advocacy community, I’ve become more assertive when it comes to these kinds of comments. I’ve become more consistent in setting boundaries when it comes to my condition, including not overextending myself and not allowing people to give unsolicited medical advice to me.

The reality of narcolepsy

There are many reasons why I don’t welcome medical advice from random people. The first is that narcolepsy is a severely disabling neurological condition. While there are building-blocks of symptom management, such as scheduled naps and medication regimens, symptoms are lifelong and severe. Simply trying yoga or changing diet will not fix the fact that I have a severe disability. The very thought of this is offensive, because it undermines how much I really struggle day-to-day.

Having a bit of fatigue from a sedentary lifestyle as an able-bodied person, for example, is nothing compared to the disabling sleep attacks, cataplexy attacks, and insomnia that I experience as a person with narcolepsy. In fact, my symptoms are so bad that getting any food at all into my system is a struggle, let alone putting in the extra effort for a special diet. And how am I supposed to go running if I am having cataplexy attacks forty times per day without my narcolepsy medication, or if I am falling asleep while running?

Suggestions such as these are hurtful and invalidating, because they disregard the fact that our narcolepsy symptoms impact every aspect of our lives, and downplay their severity.

People don't always understand it

Another reason why I don’t like people making these comments is because by doing so they illustrate how little they understand about narcolepsy. And yes, I understand that these comments are most often made from a place of wanting to help. But there are better ways of supporting disabled people.

For example, I post a lot of articles on my social media pages about my journey with narcolepsy. When people give me medical advice on my own condition, and I can tell that they haven’t read my articles, it is disconcerting. How are they supposed to give appropriate advice on a medical condition that they are not interested in actually researching or reading about? Or even experience themselves? In short – they cannot.

Each person's experience is unique

Finally, as a person with narcolepsy, I would never recommend a treatment plan to another person with narcolepsy. It is even against Narcolepsy.Sleep-Disorder.net’s code-of-conduct, and for good reason! Everyone responds to treatments differently.

Personally, I’ve tried every narcolepsy treatment available to me before landing on the treatment plan that I have currently. Looking at me from a glance, you could never know that. It is imperative to remember that we are all on our own individual journeys, and the fact that something works for one person does not mean it will work for another person.

How about you?

Do you deal with unsolicited medical advice? Would you like to share some of the worst tips you’ve been given for dealing with your narcolepsy symptoms? If so, please feel free to vent in the comments! You are not alone in this.