Addressing Narcolepsy Misconceptions
What misconceptions about narcolepsy have you had to address with your family and friends? How did you handle it? Share below!
My sister was diagnosed about five years before I was. We live about five hours from one another. I have actually being toying with the idea of starting an in-person support group. My sleep doctor has agreed to assist in any way she is able and my church has agreed to letting me use the facilities. I've been to a couple of webinars about peer-led groups and a friend/old boss who is an RN and wellness coach has agreed to help. I just need to start reaching out. Fortunately, my friends are way more supportive.
How awesome,
! It sounds like you have done a lot of work already. I hope you are able to pull in a good group of people. Please feel free to post in the forums section (https://narcolepsy.sleep-disorders.net/forums) if ever you have questions or issues you think the community can help you with. I would love to hear more once you get it up in running. - Lori (Team Member)
A few things, justifying the amount of medication I take every day just to maintain some semblance of alertness, being accused of lying about forgetfulness, and getting raked over the coals for having time to take a nap but not finishing some chore. It takes the air right out of me. I have given up trying to explain what living with Narcolepsy is like. I've used literature, medical journals, even sleep professionals as resources and nothing has worked. It seems that when someone gets something in their head, dynamite can't blow it out.
I wish you had more empathy and support,
. Unfortunately, you are not alone. Narcolespy is an invisible illness and to many people have trouble accepting and understanding illness that come with no visible evidence. I am glad you found this community though and I hope it helps. Do you know anyone else with narcolepsy aside from the people here? Here is an article from one of our advocates about her experiences with in-person support: https://narcolepsy.sleep-disorders.net/living/support-moving. Sending the best of all wishes your way. - Lori (Team Member)
People say they understand I have no control on when I am awake and when I am asleep, until it impacts them and then they say that there must be something I'm not doing...like I want this life!
RIGHT? I've had people say this to me as well. It's so frustrating when we are obviously doing everything in our control to try to live our lives with this disease. I've lost so many friends due to their ableism and inability (or refusal) to understand the extent of my disability. I've had people push me past my physical limits, then act shocked when I end up having sleep attacks in public because of it. I am trying to advocate better for myself now, but it is hard work. I discuss this topic in my article here: https://narcolepsy.sleep-disorders.net/living/when-friends-understand I'm sure you can relate. You are not alone in this, even though it may feel like it. I promise that! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
The way I see it, is the science is one thing, the meds are another, and the patient living experience is another.
The science has come such a long way in a relatively short frame of time, 2 to 3 decades since the infancy of understanding occurred, being the discovery of the lack of or total loss of Hypocretin/Orexin, first in the brains of dogs with Cataplexy, then the brains of diseased humans who'd had Cataplexy.
The science tells so much, connecting huge dots, into the why and how, somewhat also the what, though that's where the patient living experience seems to have been left behind.
The science and the meds are more interconnected than the patient living experience.
So many of the doctors out there, for the most part seem to be some 2 to 3 decades behind the science, while solely focusing on the meds.
The patient living experience is to relate directly to the reality and potential gravity of the symptoms, how there's a massively wide and broad spectrum involved in the disease, the 'what' those with the disease go through, how overlapping and intermixing the symptoms and comorbidities are (there's some ~80% with the disease living with comorbidities, a high percentage that is) and can be.
The above is my observation; I get the medical realm is about medicine and not really the patient living experience, but there are seriously negative consequences of such.Misconceptions:
Will start with this link: https://www.tandfonline.com/doi/abs/10.3810/pgm.2014.01.2727
- The disease is so so much more than a sleep disorder alone.
- There is a massively wide and broad spectrum involved in the disease; it is again much more than a sleep disorder alone.
- While many are on the lesser gravity end of the spectrum, many are on the harsher side of the spectrum, and so many are all around in between the two ends.
- No two persons experience, describe and/or interpret, the symptoms of and disease, in the exact same manner, it is a bit different for each with it, though the similarities can be profoundly very much the same.
- Some with Narcolepsy are living with what is and can be a very impacting, life altering, symptom/condition that is nearly, having an additional seizure disorder on top of the other core symptoms of the disease, which all revolve around broken sleep patterns/dysfunctional REM.
- It is not a mental disorder in itself, even though it is classified within the Diagnostic Statistical Manual of Mental Disorders: Fifth Edition 2013; within the category of sleep disorders called Hypersomnia (Hypersomnolence) Disorders, even though the disease tends to also, on top of Excessive Daytime Sleepiness, involve Disrupted Nighttime Sleep (not specifically considered insomnia, but in that category, too).
- It seems to develop (at least more definitively in science so far, towards Type 1) due to an autoimmune attack response reaction matter that leaves a person with what is literal damage within their brain, Hypothalamus, the secreting cells of a critical neurotransmitter/neuropeptide/hormone. Very similar in many ways to Diabetes.
- Sleepiness vs Tiredness and then there's Exhaustion; so many terms are loose and flexible which just causes difficulties relating to misunderstanding and confusion.
- Cataplexy has rampant misunderstanding, confusion and even confliciton out there; it's problematic in various ways.
- The disease being 'treatable' and the many commonly thrown around phrases, which for me are absolutely not reality because not one single medication has benefited me but rather caused me to be way worse off, though hearing "a person with the disease can live a near to normal life on the current medications,' or 'the disease is treatable,' or 'always seek another medication when one stops being beneficial,' etc.
Such all for me, is literally discouraging, misleading, inappropriate to be saying repetitively, inaccurate, distasteful and super disheartening; I know I'm not alone, feeling as though the medical realm chewed me up and threw me into a pigeon hole (no direction to turn) / black hole (no further answers to be had). [Not saying such to discourage anyone from taking and/or trying the meds, they do help many but again many go into the hole I mentioned, there will be trade offs whatever direction one with the disease goes, one has to keep their head up and both educate themselves along with their doctors to their best ability to do so. I digress!]Hi
. Unfortunately, this is the case in the treatment of many diseases. Doctors are experts in the diagnosis and treatment of diseases, not necessarilty in the reality of living with them. When people are diagnosed with diabetes these days, good doctors refer them to diabetes educators or dieticans/nutrionalists who can help them learn how to change their diets and lifestyles. Wouldn't it be nice if there were similar specialists that doctors could refer people to after a narcolepsy diagnosis? I asked you in another forum about whether you are taking any medications that help, but you have answered that here. I hope this community can help you feel less alone and more supported. Warmly, Lori (Team Member) I've been saying for a while now, how there really needs to be an organization (non profit) with zero ties to the medical realm, as all current one's have ties to pharma and they use the phrases that in my mind, don't always help people and are potentially even discouraging, disheartening to many.
The organization would be advocates for patients and be solely about offering insight into the disease for what it is, without throwing around the phrases directing back to meds, but would be upfront and open to discussing lifestyle stuff too, while not discouraging taking/trying meds, but basically leaving that side of it all, out.
Like you described, educating patients to what they're potentially up against in the gravity of the symptoms and disease.No idea how something would be created, I'd sure be happy to be on board; I cannot sustain activity for reward (which generally in our society/culture, reward equates to money, and people are very capable of sustaining activity for). I can not live up to the commonly set expectations out there in society and culture, especially in regard to employment, business, even certain relationship stuff; though I can very much find reward in helping others, offering what I am able to do and capable of doing on my own schedule, so to speak.
Wish I could create such a thing, it is absolutely needed, I personally think the stuff I've mentioned as my 'observations' is very much more so relevant and impacting, unique to this disease in certain angles, often tying back to just the broken stereotype that brings, us all with the disease, very much down and for no good reason...
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