March #NChat Recap : The Support Conundrum

This month’s #NChat on Saturday, March 2nd, was all about support – both for people with narcolepsy and for people who care for a person with narcolepsy.  Like all chats, this one uncovered meaningful trends in the community in one quick hour.  Some themes I noticed:

  • The narcolepsy community wishes there were more updated materials to share with friends, family, and employers that accurately describe the condition and shares the latest research findings.
  • Parents of children with narcolepsy express that their children have a hard time communicating symptoms.
  • People with narcolepsy often feel guilty when they ask for additional help from loved ones.
  • Parents of teenagers with narcolepsy may have some difficulty distinguishing between narcolepsy symptoms and normal teenage behavior.
  • More resources on the Americans With Disabilities Act and similar laws in other countries to help people with narcolepsy successfully ask for accommodations in the work place and in school are needed.

Thanks to all who participated!  Here are the questions asks along with several responses.

Q1. What resources are currently available for those supporting PWN? What resources are lacking?

I have no support, I have been told by my boss that I achieve 100% and that is not good enough cos others do more.

By having a database of #PWN, I hope to facilitate creation of more in-person support groups. This was part of my response.  If you’d like to be included in the database, please email me your name and city/state.  stridesagainstnarcolepsy@gmail.com

I’ve had my mom, dad, wife, and MIL all read Julie’s new book and it has started some great conversations.

My husband just goes with what I tell him. HA HA! He doesn’t really look into Narcolepsy on his own. HA HA.

I think there are facebook groups, these twitter chats, and online forums….

Printed materials are very expensive and hard to find. Online resources are inconsisentent and often outdated.

Besides the Narcolepsy Network and Google, I don’t think there is much information out for supporters of PWN

Q2. What information would be useful to provide to those who support you in your diagnosis of #narcolepsy? #NChat

 I’m trying to figure out what to tell my employer and such, and figure out the support/accommodations stuff.

This brings up a very important point. We need more resources on our rights in the ADA and how to ask for accommodation

I have a hard time explaining how some days are better/worse than others. What I needed yesterday may not be what I need today.

it’s hard for me to find the line of lazy teenage son & pwn!

Something to show everybody we love that we aren’t lazy and we need help.

Or just a post-it note saying ” LEAVE ME ALONE, ITS NAP TIME ”

it’s upsetting for me cause I don’t know what to do to help! Afraid he wastes precious moments! Don’t want to be nagging mama

My parents have always read up on it etc; although they don’t understand it, they try. thats all that counts.

There seems to be so much I want to have my family support me w/ but I have major problems communicating it.

We need our own tees! It is the best way to get the message across IMO. If ppl want to learn more, they can ask what it’s all abt

Q3. For those who support someone w/ #narcolepsy- what struggles do you face trying to be supportive?

My wife used to find it frustrating when I would start to doze off /need to go to bed early but I think she’s gotten used to it.

My husband says his only struggle is that I fall asleep after sex. Yep. That is what he said.

Not knowing if I’m helping or nagging! I have to tell him things numerous times to make sure he gets it sometimes

It’s hard as a carer to fully understand how it feels with N. My son is 8, and can’t always explain how he feels bad

My husband also needs me to tell him exactly what I need help with instead of hoping he’ll just read my mind lol.

I don’t think I have clue how to be supportive for someone with narcolepsy, though I do dream about the possibility….

Hubby has told me that I’m frustrating because I don’t open up when I’m having a bad day.

Q4. PWN- do you find it difficult or feel guilty asking for help? Why?
Yes, in large part because of how I was conditioned growing up

I find it extremely difficult to ask for help. I feel like I should be able to do more and get very frustrated when I can’t.

Definitely. All the time. There is such a culture in academia of not asking for “special considerations” or showing any sign of weakness. Your ability to think fast, well, all the time is your biggest asset

I didn’t ask for help for 2 years, I didn’t want to bother anyone. I just suffered alone. Nobody truly understands.

I hate asking for help, it’s just who I am as a person. Too Independent for my own good

No more. Now that I know what I need (mostly a few naps a day), I let everyone know.  It used to be a problem b4

So, we all want help and understanding but we don’t want to ask because we feel guilty? Conundrum!

Q5. PWN- what help would be useful to you to make your daily life easier that you don’t currently receive?

I also would like to have a more effective night time medication that didn’t require waking up for a second dose in the night…

Siestas being commonplace here like they are in Spain and other hot countries would make Ben’s naps at school seem less unusual!

I’d love to have discounts on pillows, mattresses & stuff. I really need a better mattress but they’re so expensive

Just more time to sleep and eat healthy oh and a free pill to help me quit smoking

The ability to be more consistent with my schedule would help immensely.

An Easy Button? Honesty? I want to just sit those who aren’t getting it in a room & force them to let me explain (w/ duct tape).

More time to sleep, clean, cook. A more organized life so I can just make it through the day without being so frustrated.

More hours in the day and working from home! Haha, a girl can dream. Still thankful for understanding employers!

I also wish this city had better public transportation so I wouldn’t have to drive as much.

I need a damn housekeeper lol.

Scheduled universal nap time so that I don’t feel like I am missing out on anything 😉 ha too much to ask?

Q6. For those with #cataplexy- how do you communicate it to those around you when it’s happening?

I don’t go anywhere by myself due to the cataplexy. Also, I explain to all new ppl I meet not to call 911, just make me comfy

I can’t communicate when it’s happening most of the time.  I have told co-workers and family how to react.

This is a big one for my son. He said he just wants to be normal! People think he is mentally challenged or on drugs.

I have a med ID bracelet but it’s so ugly. I do carry the card that came w/it in my wallet, but I never go anywhere by myself.

I don’t, except to my boyfriend. I point out when my knees go weak, when he’s making me laugh so hard I go limp, or tiredness

I’ve been lucky and haven’t had Cataplexy for 2 years and having a routine etc. I know one day it will return though. I can wait

I’m going to get a medical bracelet and also put a laminated card in my wallet describing more about cataplexy

I’m still figuring this out… now I just mumble… cataplexy…

That’s a hard one, mine is mild…but in the occasions where I’ve needed to talk, I haven’t been able to.

The next #NChat is schedule for Saturday, April 6th.  I will post more when we’ve confirmed which time worked better for everyone.

If you’ve got an idea for a topic or have a question you’d like asked during #NChat, please let me know! 

Comments

  1. Eelia says:

    I just found this resource that helps with communicating with your employer and it has a look up for each disability and the possible accommodation. I hope this helps http://askjan.org/

    • admin says:

      Thank you for your comment! I’m familiar with that site, but thank you for reminding me of it. It would be a good addition to the resources section of my blog!

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