8 replies to this topic

[Saraiah]

The Washington Post (of Washington DC and the surrounding areas) has started a series in its Health section on individuals who have had a very difficult time getting the correct diagnosis for their physical symptoms. Thinking that this might be a great opportunity for an article educating people about narcolepsy, I emailed the journalist in charge of the series. I described a bit of my 19 year wait for the right diagnosis, and suggested that another person with narcolepsy (without my fear of employment discrimination) might make a very worthwhile subject for an article in her series.

The journalist replied that narcolepsy would indeed be an interesting illness to profile in the series. The hitch is that anyone volunteering to be profiled in one of these lengthy articles must agree to the following:

• His/her name and photograph will be published in the article; and
• He/she must agree to open his/her medical records to the journalist.

I can't volunteer to do it because I am sure that I would be even more vulnerable to discrimination by employers on the basis of the narcolepsy for many years to come, and I am just starting a job search after my employer wrongfully attempted to fire me less than a month ago. I know many people with narcolepsy in the DC area would be in the same boat. But I just thought I'd let folks know, in case there is someone in DC, Maryland, or Virginia who would not be harmed by having their name and photograph published along with the fact of coping with narcolepsy.

Here is a link to yesterday's "Mystery Diagnosis" article in The Washington Post:
http://www.washingto...9080302241.html

At the end of the article, you'll find the following text:
"If you have a Medical Mystery that has been solved, e-mail medicalmysteries@washpost.com. To read previous mysteries, go to http://www.washingtonpost. com/health."

Finally, here is the email that I received yesterday in reply to my suggestion that a person with narcolepsy be profiled:

"Hi--Thanks so much for writing. I think narcolepsy is a great idea for mystery column--but I'd need someone willing to let me profile his/her case.

If you change your mind, I'd be very interested in talking w/you. But I need name and photo for the column.All best, Sandy Boodman

Sandra G. Boodman
Medical Mysteries Columnist
Washington Post
1150 15th Street, NW
Washington, DC 20071
202.334.7391"

I'm hoping that someone that wouldn't be harmed by being profiled might be able to give it a go!

Saraiah

[Marcianna]

That is pretty great! do you have to live in the area? I was kinda confused by that.

[Bafflegab]

If you are interested in doing something like this, you give up all expectations of privacy in the workplace. In the workplace, this can mean that discussion of your condition by your supervisor or harassment (i.e., inappropriate jokes or snide comments) from your co-workers cannot be used in a claim of discrimination against your employer.

I think a story like this could be a really good thing and I'd love to read it, but if you are thinking about volunteering to be interviewed be sure you go into it with a full understanding of what you are giving up.

I am lucky that my boss and I have a good relationship and as a result I don't have a problem keeping him fully informed, but that does not mean I want the Washington Post to have access to my medical record. A misdiagnosis is still a diagnosis; and having been a journalist (I'm a member of the Association of Health Care Journalists) I can say with full confidence that many journalists are devoted less to honesty than to self-preservation. There are a lot of really good, ethical, honest, and conscientious reporters out there. But there are many more people working as journalists who consider themselves pragmatic and as such, are committed solely to their pay check. Even if a reporter isn't ethically-challenged, he or she may be lazy or need to please an editor whose interests may not be the same as yours.

[Bafflegab]

Having said all that, I'd be remiss if I didn't mention that in employment discrimination cases all bets are off.

[Saraiah]

Hi Bafflegab and Marcianna,

Bafflegab, thanks very much for the information about the possible negative consequences to agreeing to have one's medical record publicly plumbed. I guess I was imagining that someone out there with N might be in a situation such as being retired, or being on SSDI or SSI income, and feeling comfortable that he/she wouldn't need or want to be in an employment setting again - some kind of situation in which the person volunteering to be profiled felt very comfortable that he/she wouldn't be harmed by the article. I was thinking of the example of Muhammad Duad, who was in an N documentary done in England. I think he felt comfortable that participating in the documentary wouldn't cause him harm, given his particular situation, and might help a great deal to educate the public.

Marcianna, now that you ask the question, I don't really know whether the person being profiled in the Washington Post series would have to live in the Washington DC area or not. I had just assumed that they would need to live local to the paper - but if someone living out of the DC area was interested, it would be easy to email the journalist and inquire.

It's a hard thing to figure out how to provide education to the larger community - should one wish to educate the community - without harming oneself.

Saraiah

[Bafflegab]

You're right, Saraiah. I was thinking about people who are employed and may be interested in being interviewed.

I think that for people who aren't working and don't have an issue with giving up their narcolepsy privacy (there isn't any reason for the Post to have access to records on anything other than narcolepsy--in my case, my neurologist/sleep specialist gives me a copy of my record at the end of each visit, so it may not be a big deal for other specialists to parse out the narcolepsy-only records) an interview in the Post could be a really good thing.

If I wasn't so skeptical of the press (for reasons that go beyond the reasons I mentioned in the earlier post), I'd volunteer. Normally, I'm quite open my health and don't mind talking about it. I find it makes relationships easier and, hopefully, people won't take my need for isolation and almost complete lack of social grace (the donuts I bring into the office, notwithstanding) that is punctuated with an occasional loving and exuberant nature personally. It doesn't work like I hope it will, but I'm an optimist by nature (excepting the press, of course).

I certainly do not want to dissuade people from contacting the Post (my home town newspaper has a health reporter--Ashley Andyshak, Frederick News-Post--who I think is quite good--although I wouldn't talk to any other reporter in the news room--and who would make a good point of contact) if they are even remotely interested (geographically or emotionally).

[Irishhh]

You're right, Saraiah. I was thinking about people who are employed and may be interested in being interviewed.

I think that for people who aren't working and don't have an issue with giving up their narcolepsy privacy (there isn't any reason for the Post to have access to records on anything other than narcolepsy--in my case, my neurologist/sleep specialist gives me a copy of my record at the end of each visit, so it may not be a big deal for other specialists to parse out the narcolepsy-only records) an interview in the Post could be a really good thing.

If I wasn't so skeptical of the press (for reasons that go beyond the reasons I mentioned in the earlier post), I'd volunteer. Normally, I'm quite open my health and don't mind talking about it. I find it makes relationships easier and, hopefully, people won't take my need for isolation and almost complete lack of social grace (the donuts I bring into the office, notwithstanding) that is punctuated with an occasional loving and exuberant nature personally. It doesn't work like I hope it will, but I'm an optimist by nature (excepting the press, of course).

I certainly do not want to dissuade people from contacting the Post (my home town newspaper has a health reporter--Ashley Andyshak, Frederick News-Post--who I think is quite good--although I wouldn't talk to any other reporter in the news room--and who would make a good point of contact) if they are even remotely interested (geographically or emotionally).

I would be 100% all for doing this. How would I contact this person??? I don't care at all about descrimination. please let me do it! lol I would love it!!!

[Saraiah]

I would be 100% all for doing this. How would I contact this person??? I don't care at all about descrimination. please let me do it! lol I would love it!!!

Hi Irish!!

I am glad that you are interested!! I would love to see N presented as a medical mystery, so that the public first empathizes with the exhausted person, and then learns all about what N is REALLY like, and how to treat it.

The information about the Washington Post series is up in post #1 of this topic, and here it is again:

Here is a way to get to the link to the August "Mystery Diagnosis" article in The Washington Post:

• Go to www.washingtonpost.com
• In the Washington Post search box, type the following words: mystery diagnosis eating faint

You could alternately try the following link, which doesn't seem to be working for me today:
http://www.washingto...9080302241.html

At the end of the article entitled "Why did eating make her faint?", you'll find the following text:
"If you have a Medical Mystery that has been solved, e-mail medicalmysteries@washpost.com. To read previous mysteries, go to http://www.washingtonpost. com/health."


Finally, when I sent an email to medicalmysteries@washpost.com the other week, advocating that a person with N be profiled in the series, here is the answer I received:

"Hi--Thanks so much for writing. I think narcolepsy is a great idea for mystery column--but I'd need someone willing to let me profile his/her case.

If you change your mind, I'd be very interested in talking w/you. But I need name and photo for the column.All best, Sandy Boodman

Sandra G. Boodman
Medical Mysteries Columnist
Washington Post
1150 15th Street, NW
Washington, DC 20071
202.334.7391"

Irish, since you're thinking about giving this a go, you might want to private message Bafflegab, since he knows so much about the potential pitfalls of being the subject of a newspaper article. I just don't want to see you get hurt in any way, after I've encouraged people to think about giving it a try!

Good luck, let us know what Sandra Boodman has to say!

Saraiah

[Irishhh]

Hi Irish!!

I am glad that you are interested!! I would love to see N presented as a medical mystery, so that the public first empathizes with the exhausted person, and then learns all about what N is REALLY like, and how to treat it.

The information about the Washington Post series is up in post #1 of this topic, and here it is again:

Here is a way to get to the link to the August "Mystery Diagnosis" article in The Washington Post:

• Go to www.washingtonpost.com
• In the Washington Post search box, type the following words: mystery diagnosis eating faint

You could alternately try the following link, which doesn't seem to be working for me today:
http://www.washingto...9080302241.html

At the end of the article entitled "Why did eating make her faint?", you'll find the following text:
"If you have a Medical Mystery that has been solved, e-mail medicalmysteries@washpost.com. To read previous mysteries, go to http://www.washingtonpost. com/health."


Finally, when I sent an email to medicalmysteries@washpost.com the other week, advocating that a person with N be profiled in the series, here is the answer I received:

"Hi--Thanks so much for writing. I think narcolepsy is a great idea for mystery column--but I'd need someone willing to let me profile his/her case.

If you change your mind, I'd be very interested in talking w/you. But I need name and photo for the column.All best, Sandy Boodman

Sandra G. Boodman
Medical Mysteries Columnist
Washington Post
1150 15th Street, NW
Washington, DC 20071
202.334.7391"

Irish, since you're thinking about giving this a go, you might want to private message Bafflegab, since he knows so much about the potential pitfalls of being the subject of a newspaper article. I just don't want to see you get hurt in any way, after I've encouraged people to think about giving it a try!

Good luck, let us know what Sandra Boodman has to say!

Saraiah

I will certainly check into all of this. I'm writing a novel and the main character has narcolepsy. I plan to make this be a step in my direction for Narcolepsy Awareness. Hopefully things will continue to go as planned and I'll finish soon. Narcolepsy awareness, I'm all about it. So if I am joked about for having this condition or anything else, I'm prepared. If anything, when it gets to be too much I can just go to sleep to escape it all right? lol