Thing 1. Narcoleptics are not lazy. As soon as you hear the word “narcoleptic,” you should not be able to use the words “lazy,” “lack of motivation,” or “not trying.” You will never know how exhausted we are. The same rule should apply to anyone else with a disease causing extreme tiredness and lethargy (such as Hashimoto’s or CFS). Please, you focus on you, and I will focus on me.
Thing 2. My diseases are not flaws.
I once had a boyfriend who said to me,
“Christina, you’re perfect in every way.. except maybe for your sleeping thing and that rash on your ankle.”
No, I am not narcolepsy, but if I think of it in a more compassionate way, it helps me accept and love myself.
I now work with my diseases instead of struggling against them. It makes life much more livable.
Also, I have a new boyfriend who thinks my lichen planus is cute and lovingly calls me “The Sleepy Monster.”
So, embrace your disease as best you can. If it is a part of you, it is not a flaw.
Thing 3. Just because I have found symptom relief by changing my diet doesn’t mean I was misdiagnosed. Too many times, myself and others in the “gluten free narcoleptic” community have had other narcoleptics and doctors say to us, “Well, you must not really have narcolepsy.” Nothing could be farther from accurate, but still these beliefs exist. It’s like saying to someone with lupus that just because their butterfly rash gets better when they don’t go outside, they must really not have lupus. Or, just because you have symptom relief from Xyrem you are no longer narcoleptic. How screwed up is that logic? Now, whether gluten intolerance covers a larger spectrum than was once appreciated may be up for debate, but you are not allowed to tell me I’m not narcoleptic unless you’re my personal doctor (who so far has not said that, even when she knows I am more awake on a gluten-free diet). Also, the alien who visited me last night would disagree with your assertion that I was misdiagnosed.
Thing 4. I don’t make money off of gluten free. Sometimes people (especially in the narcoleptic community) are scared to change their diet because they think we have something to sell or are scamming them in someway. It’s true…there are a lot of companies that make money off of diet fads. I am not one of those people.
I am only interested in young people my age finishing school, graduating from college, and having healthy productive lives, and am interested in facilitating personal health journeys in any way I can, whether or not you decide gluten free is right for you. Personally, going gluten free is what helped me wake up and live a productive life. If you do not try gluten free, or if it doesn’t work for you, we can still be friends.
Thing 5. There is more that is not known than is known. As a scientist, I can tell you that if we think we understand something, probably we are really only just beginning to understand it. What is in a great deal of medical literature is outdated, particularly when it comes to autoimmune diseases. Narcolepsy is not an exception. There are some things we think we might know, but mostly it is unknown. Keep an open mind and try not to let medical dogma get to your head too fast, and be equally skeptical of all information that you receive. If something works or makes you feel better (and is not harming yourself or others) in some way, do it. Worry about how it might work later.