I read this on the sleep foundation website: “Counseling is very important for people with narcolepsy. The particular symptoms of this disorder are not widely understood by the general public and this may cause patients to feel uncomfortable, alienated, or depressed. The disease can also be quite frightening and the fear of falling asleep inappropriately often significantly alters life for people with narcolepsy.”

Which is all quite obvious but do you have counseling and has it made a big difference to how you cope? In the UK you would wait months for NHS counseling with a 6 week limit on consultations. In the US does your insurance pay for counseling and is it effective?

I know I could benefit from counseling but the cost is prohibitive and I wouldn’t want to see just anybody, not chosen by me but allocated by the NHS. I did that once 30 years ago and it was disastrous.

Counseling here is a pain. They seam to have problems understand sleep disorders. Sons taken an holiday for the past 3 years. Free discount or insurance all the same at this time. Need to get Julie here at the University to help train the future nurses.(Shes 2 hours away). * *uncomfortable, alienated, or depressed** To find himself his straights but instead - We get that look did they hear right. It would be nice if they take the time to goole

Hello All,

I have to comment on this. I think all of you know more about narcolepsy than any doctor you might see. I also think until you live this life it's very difficult to understand much about it because it affects each person so differently.

Yes I have had counselors (the 3 psychologists - harmful, dangerous and not truthful) The first Psychologist I saw for "marriage counseling" ended up costing me about $200,000 in the divorce (he at the last appointment told me he knew from day one the x was toxic for me...thanks doc...! Now there maybe some good ones but I never found one.

I have a "regular counselor" now who has waived her fees for me because my insurance company would not cover (out of network) and she was more concerned with helping me than wasting time fighting with the insurance company.

She is a god send for me and understands that my difficulties are related to narcolepsy. She is helping me to navigate my "new life" and gives encouragement on the successes.

As partners in Narcolepsy we can give each other understanding, support and advice not found else where.

In closing if you need psychologists, other types of doctors, special drugs to help your situation please get them and the help you need...that's is most important.

Best to you all!


How fortunate to find this lady Ranger. I would like to have counselling but only from someone with the same condition I have (surely impossible) or at least special knowledge. I don’t need medical input but I do need understanding and don’t want to have to educate them to get it. If the average doctor can’t understand the privations it puts on me and nor can friends and relations, I can’t imagine a counsellor doing better, with apologies to any wonderful counsellors out there. Trouble is I know too many people training to be counsellors who I wouldn’t want let loose on me…
Which is why I think Ben’s Friends is so remarkable; there is always someone there who understands my predicament.

Nel like you If I was to attend a counsellor they would have to have narcolepsy to have any understanding of what it’s like to live with it ( probably not likely). For now I have meet ups every now and again with other people with narcolepsy. I find meeting more than one beneficial and giving myself time with them. Time to listen, time to talk.
Then my online connection everyday with the narcolepsy community is very therapeutic. You will always recognise and want to help someone struggling more than you or someone newly diagnosed.
I think the fact that we have know hardship through our everyday struggle that we are extra caring citizens.
Think positive ! Xxx

I think meet ups are so important and it would be lovely if such small groups advertised themselves on here just in case there is someone living close enough to make contact. I see in Ben’s Friends the excitement and pleasure generated by getting together with someone who really understands. I wish the hospital clinics who treat us could have a noticeboard where people who would like to meet others for a coffee and a chat could leave a contact number. In fact I might suggest it…

I'm in the U.S. Because I am low income, I get state-sponsored insurance that does allow me to see a talk therapist (a clinical psychologist) on a regular basis. Generally, we don't talk specifically about narcolepsy but about whatever difficulties I am facing at the moment, and often these do stem from narcolepsy symptoms. I have tried to educate the therapist about the disorder and I do believe that by now she 'gets' it. I must say that these sessions are INCREDIBLY valuable - having a sympathetic professional to vent to when things become most frustrating keeps me sane! :-)

I am jealous pwntek! How lovely too that one more person in the world ‘gets it’

Yes, Nel, she is both exceptionally compassionate, and intelligent enough to understand the disorder. I really got lucky and I am really grateful. It's my wish that each and every one of us finds someone like this!
Nel said:

I am jealous pwntek! How lovely too that one more person in the world 'gets it'