Need Help--What To Say For News Interview!

Discussion in 'Fibromyalgia Main Forum' started by kmelodyg, Jul 21, 2003.

  1. kmelodyg

    kmelodyg New Member

    Hey guys! I just got off the phone with the producer of the local TV news. I have my on-camera interview next Tuesday!!!!!! So, now I need some advice on what I should talk about and emphasize regarding Chronic Pain and FMS. I had gotten a couple of other suggestions in the past few days, but I could use a little more! HELP!!!!!! Me with my massive fibro-fog, I don't want to forget anything important. I'd like to get a script written down beforehand. Let me know what you think!!!!!

    Thanks!

    Lots of Love,
    Kathryn
  2. Mikie

    Mikie Moderator

    Write down the points you want to make so you can work them into the answers to their questions. Just some thoughts:

    * Difficulty in getting diagnosed
    * Recent recognition for our illnesses, but we have a long way to go (thank them for giving you this opportunity to help educate people on our illnesses)
    * Pain and fatigue are not the only symptoms but that there are more than 100 accompanying symptoms like IBS, insomnia, RLS, etc.
    * Finding a doctor who is knowledgeable in our illnesses is often very difficult.
    * Like with any chronic illnesses, FMS and CFIDS can disrupt our lives in terms of self-esteem, finances, and personal relations
    * There is currently no known cause or cure. We desperately need the govt. to set aside money for more research

    Well, this is by no means a comprehensive list, but perhaps it will give you some ideas. Thanks for asking.

    Just in case these guys have a hidden agenda to sensationalize this topic, be ready to refute claims that it's a women's illness or that it's all in our heads or caused by depression. I doubt they are going to do this, but it doesn't hurt to be prepared.

    Love, Mikie
  3. LauraLea

    LauraLea New Member

    how exciting. I've been away from the board for a long time. I just started a new job and decided it was time to check in to see what's up.

    I am so glad we are getting some exposure. I'm sure you will do great just have your notes ready and you will be fine. Way to go.

    Good luck let us know how it goes.
  4. mamafurr

    mamafurr New Member



    of course i'd get up there an drool,,,,blah blah, and drool some more...i so respect you doing this.

    maybe you might want to mention that fm has an "awareness day" now in may. that is a big step that we have our own day. did they give you questions that they will be asking? mikie's ideas are great...especially the part refuting that this dd is in all in our head...yea and our hands, feet, legs, backs, and skin!
    it would be awesome if you could put this interview on the web...you know a video stream...i would love to see it. or maybe the archives of the news channel has something on their web site? could you tell me the call letters and location of the channel?
    stay calm :) you are going to do mmmaaaaavvveeelously
    :)
    alice

  5. Dara

    Dara New Member

    fact that insurance companies make us jump through the hoops regarding disability. Also, that it is an invisible illness. Also, the financial loss it has caused so many people because of the denial of benefits from SSD and the big insurance companies?

    Dara
  6. kuntryhart

    kuntryhart New Member

    How exciting for you! Sounds like you are right on track. Good luck, and prayers for a clear mind when it's time to do the interview. Let us know how it goes, and if you get any feedback. Kuntryhart
  7. tandy

    tandy New Member

    please keep us posted as to the "showtime!" I liked alot of Racwhite ideas!!because all that was said is soooooo true~ We can't make plans. We don't look sick.
    And the long range,forever of our symptoms!!! I've heard all too many times people say"oh my god!now I know how you feel,I hurt my back and could barely move all last week!"
    Well,ours lasts a lifetime!!we NEVER get better!!Myself,and many of us here have had this for 10,20 years!everyday! And the issue of Disability might be discussed.Make sure thats its known how many of us can't work but are denied benefits!
    I'm sure you'll do just great for all of us!
    :)
    [This Message was Edited on 07/21/2003]
  8. Mar19

    Mar19 New Member

    Lots of good ideas have already been posted. My biggest problem is always the lack of understanding from others. Most of us have been in constant pain for years, "normals" don't have a clue what that feels like. I remember a woman at church once told me. "You can't baby yourself. I had surgery to remove a bunion ten years ago and I MADE myself do things even though it hurt. You just can't sit around feeling sorry for yourself." I just smiled and told her I was glad that she was healthy. I don't think there are enough words in the universe to get thru to people like that. I distance myself from them as much as possible.
    Love and blessings
    Mar

    PS..will you be able to get a transcript of the interview? I'm sure we all would love to read it!
  9. pearls

    pearls New Member

    Others ALWAYS know exactly how we feel because they feel the same. Bah! HUMBUG!! Just yesterday, after having explained what fibromyalgia was, my guest departed with, "I'm so glad you're feeling better." Didn't she HEAR what I had said!? Also, while I was there, I DID look good, and I DID perform my hostess duties well. She undoubtedly will tell everyone how WELL I'm doing. What she doesn't know is that after she left, and I took a shower, I changed my clothes and collapsed into my chair for the rest of the day and evening.

    Well, they ALL know exactly how THAT feels, too! Again, bah! HUMBUG!! They don't know that the tiredness was bone deep, that I felt like I had the flu in a number of ways, that my chest hurt so bad I had to triple what I'd been taking lately for it, and that to even control it I must take narcotics! She has no idea that I moaned and groaned until I finally slept about 3:00 a.m.

    She doesn't understand was that while she slept until noon yesterday, I had been up since 4:00 a.m. because the pain had rendered me unable to sleep, that I needed to take a pill to function, that I had cooked two meals, cleaned up after them, and had done a number of chores. She has no idea that, while I was happy to have her visit, I now desperately needed for her to leave because I needed rest. She has no idea that yesterday after she left, my disrupted schedule caused my chest pain came back so bad that the restorative sleep I needed so badly was reduced to only 2 to 3 hours last night, triggering today's intense fatigue!

    But she was so glad I feel better, now... Frankly, my energy had left me, so I didn't correct her on this. She needed to go because I needed to rest.

    People have no idea - CAN have no idea how things like this wear us down - how it disrupts our lives and those of our immediate families. They have no idea of the frustration these things bring, how lonely we feel that nobody understands - that nobody CAN understand. Thank God for the Internet. At least our cyber-friends with the same problems understand.

    Good luck with your interview.

    A piece of advice: if you do get stuck and can't think of a comeback - blame it on fibrofog! Do have a definition of fibrofog ready so your excuse - a very good one, I think - will make sense.

    Another tip - if you have time, you may want to tell a very short, poingant story illustrating fibrofog. This could make an excellent opening for telling our story - and a convenient scapegoat for any fibrofog you may experience yourself during the interview.

    -Pearl
  10. elaine_p

    elaine_p New Member

    I wasn't going to post, since my suggestion was already discussed, but something came to mind before I clicked on the back button....

    The fact that one treatment doesn't work for anyone. (I just had a neighbor say the other day "so-and-so had CFS and they got better...." Grrr. I finished taking the garbage out and told him that statistically, only 14% get better, so good for the person!)

    Anyway, that's not as important as some of the other things suggested (my first suggestion was about disability, and how many people are denied it by both SS and private ins. companies, how mnay people have to file bankruptcy, etc.).
  11. FranWi

    FranWi New Member

    For the reporter to plug. Informational and community sites for those looking for more info or support.

    :)

    Fran

    Wish this was national segment! I'd love to get the word out so my bosses could understand why I can't cope as well with all the physical labor I've handled for the last 10 years![This Message was Edited on 07/21/2003]
  12. aduck

    aduck New Member

    painting a TRUE and REAL picture of this illness instead of making us look like hypochondriacs and we need the media to start stating the FACTS of all the medical evidence found in the past few years.

    I remember the one "E.R" TV show episode I saw. There was an actress on there playing the role of someone who is supposed to have MCS and she brought in a gas mask or something in the hospital and her own aerosol disinfectant spray, always spraying it around her, and everyone who has CFS/MCS/FM knows that someone with MCS does not use aerosol sprays with tons of toxic chemicals in them.

    And the "Northern Exposure" show tried to portray someone with MCS, but made the illness still look much more "strange" than it is in my opinion.

    Tell them that some of us have had the blessing to have a wonderful, loving, long-term relationships with someone we've grown to love SO MUCH, and are having to consider ending the relationship because we can't stand to tie the person down with this responsibility and have them live this not-normal existence for the rest of their lives. And that our significant other, for some of us, sometimes still thinks we are just "wacky" in the head even though we show them the medical evidence. THis has got to be the most infuriating thing about this illness.

    Try to stress, as others have mentioned, The ALONENESS of it all. I feel like I have to be away from everyone almost all the time in order to start feeling better unless I go live in a community where no one uses any scents or synthetic chemicals and where I never have to hear again "BUT YOU LOOK SO GOOD! You just need to get out more!". barf.
  13. kmelodyg

    kmelodyg New Member

    Thanks everyone. You all had some really great ideas! I am glad that you could use my letter Sandy. That's why I posted it! I asked everyone on this board many times to help me write that, but I ended up doing it on my own. I know that it can be hard to put this down in words, so I wanted to put that on for someone else. That makes me feel good.

    So, the healthcast producer is coming over to my house next Tuesday for the interview!! She asked me what I usually do on a regular afternoon. And I said that I rarely get out. I am usually online or watching TV, reading, etc. She wanted to get a couple different shots of me doing different things. I am so excited!

    I will tell you guys more as I find out everything. Hopefully my story will be online too. Wish me luck!

    Lots of love,
    Kathryn