Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
It would be nice to have a simple “What is ___” statement here. I prefer to usually focus on narcolepsy, because it is the disease that affects my life to the greatest extent. To be fair, I should introduce all of the conditions I have and discuss. After being sleepy my entire life, I was diagnosed with narcolepsy at the age of 21. At 22, I was diagnosed with Hashimoto’s thyroiditis, and at 23 lichen planus.
Narcolepsy is a horrendously misunderstood neurological (most likely autoimmune) disease.
It is characterized by four things:
a) excessive daytime sleepiness (EDS) And no, folks, we’re not talking about the kind that you get when you sit too long at your desk and can remedy with a cup of coffee. We’re talking about the kind of sleepiness that happens after you’ve been asleep for twenty hours and you wake up feeling like you’ve just gone to battle or run a marathon. As if you’ve been awake for 5 days already. The kind that hurts and makes you feel like you’re losing your mind. The kind you can’t help. You can’t help it so much you sleep when you’re not only sitting or laying there, but also when you’re watching TV, driving, trying to have a conversation with someone, or trying to have sex. You just can’t help it. It happens.
b) hypnagogic hallucinations Sounds scary, right? Right. Hypnagogic hallucinations are the kind of dreams that occur as you are falling asleep (hypnagogic) or waking up (hypnapopmic). They occur during the same times during sleep that lucid dreaming does. They are “dreams” that you’re awake for and can occur for any of your senses. Sometimes they’re nice, sometimes they’re not. For a lot of people, they can be alien intruders, things or people coming into the room that aren’t really there, loud noises and crashes, or bright lights, intense emotions and feelings, or sexual encounters and feelings that aren’t actually happening. An important feature is they seem to be really happening (in a technical sense, they are really happening – in your head); and this can be really disturbing for some people.
c) sleep paralysis Sleep paralysis is a bitch. Especially if it occurs along with a hypnagogic hallucination. You know, you’re awake but you can’t move anything? These are kind of common for healthy people to experience – maybe about once a year. But, try having this happen every time you sleep.
Sleep paralysis is one of the most terrifying aspects of narcolepsy, and if your brain is strange enough, will make you feel like you’re losing your mind. Try telling your mom you were abducted by aliens last night and they came from another dimension through the mirror. Then tell her with a serious look on your face. See?
As a side note, sleep paralysis is believed to be linked to SUNDS (Sudden Unexpected Nocturnal Death Syndrome), and there’s a lot of superstition around it in the Philippines. Many people believe it’s linked to high carbohydrate consumption in the evening. Which is just another reason why you shouldn’t eat bread. heh.
d) cataplexy. When you think of narcolepsy, this is probably what you are thinking of. Usually, it’s not people just falling over asleep like most people believe. Rather it is a spontaneous loss of muscle tone — you can think of it like the opposite of a seizure. Instead of uncontrollably moving (seizure), you are uncontrollably not moving (cataplexy). The current medical opinion is that as a narcoleptic either you have cataplexy, or you do not have cataplexy; although there is probably some spectrum in between (I for example, do not have overt cataplexy, but intensely avoid overly emotional situations or I get muscle weakness, though I don’t have total loss of muscle tone). Anyway, when you laugh hysterically at dogs falling over when they get excited for food? That’s it.
2) What is Hashimoto’s thyroditis?
Hashimoto’s is an autoimmune diseases characterized by the destruction of thyroid tissue. What’s cool about it is that it was the first disease to be recognized as an official autoimmune disease. Here’s a quick and dirty on the symptoms:
Myxedematous psychosis, weight gain, depression, mania, sensitivity to heat and cold, paresthesia, fatigue, panic attacks, bradycardia, tachycardia, high cholesterol, reactive hypoglycemia, constipation, migraines, muscle weakness, cramps, memory loss, infertility and hair loss.
So, you can easily see why it is often misdiagnosed or under-diagnosed, and also why it sucks. Couple it with narcolepsy and you’re tired all the damn time. I’ve talked extensively about Hashimoto’s on other posts.
3) What is Lichen Planus?
Lichen planus is three things: gross, embarrassing, and extremely itchy. I’ve had the same spot of LP on my ankle for more than 6 years. It changes shapes slowly, but it’s just as gross as it was when I first got it. (See it in all it’s beauty on my right ankle in the picture below).
It isn’t extremely well characterized as to what exactly it is (other than immune cells invading your skin) but it is commonly seen with Hashimoto’s thyroiditis, and there is good evidence that it is an autoimmune disease (your skin cells have the same receptors that are implicated in Hashi’s). A thorough review of the literature will convince people that it is, and it is taught as if it were an autoimmune disease in many classes, although the exact mechanism isn’t well known.
So, there are my diseases in a nutshell; but, it’s not ME, per se. As for an introduction to myself, you can find a tidbit: here.
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 to 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.