Sunday, February 5, 2012

The Stigma Of RA And The Media

I have done two interviews for Health Monitor in the last five months.  The first was about living with rheumatoid arthritis.    The writer, Kristina Mastrocola, contacted me by email and we set up a 20 minute interview.  I wasn't sure what to expect, would I be worthwhile to interview?  I'm just a dumb old country boy, there are many smarter than myself that would surely be better candidates to interviw.  She was very nice and easy to talk to while drawing the information out that she needed.  
Last month Kristina sent the final PDF file, that had been approved for production, to me.  I took a deep breath, with the exception of Cycle News I have never been in national print, and opened the file.  I read it and, with the exception of one minor note about dual sport riding, everything appeared good.  Oh ... and the fact that I had a photographer shoot pictures of me with my bike, at the request of the editor, and then they run a stinking street bike photo with the story!  I sent Kristina a quick note back thanking her and told her that I was pleased with the article with the exception of the photo.  She understood, the photo was out of her control.  All was good.
Then the next day I reread it ... wait a minute.  I reread it a second time.  Something was curiously missing that I had overlooked in my quick read the first time.  Pain, there was no mention of it.  I specifically pointed that out.  I still hurt everyday despite taking chemo and the DMARD's.  I do not want people that read this article to simply brush it off as ... he doesn't really have RA or his RA isn't the same as mine.  Why does the media insist on hiding the fact that most of us live in pain every single day?  After reading the article, it is almost like an Enbrel or Celebrex commercial where it sounds like I can go run on the beach or do anything I want to do.  That is far from my reality.  At the end of my shift at work, some nights my feet and hips hurt so bad I that can barely walk to my truck.  
I am not Superman, never have been, never wanted to be.  I am not asking for anyones sympathy, just a little truth and understanding of what we live with day in and day out, after all they contacted ME to do a story about living with RA.  


Wren said...

That's seriously wrong, Terry. Were you able to contact her to point out the missing elephant in the room? I hope so, because as you said, without it the story is nothing but fluff, and worse, misleading.

A writer interviewed me over the phone several months ago, too. I can't recall her name, now, but I haven't received any notice of her story going to print. Funny you wrote about this today, as I was wondering about it myself the other day.

I don't blame you a bit for being angry. I've always wondered how "they" can do stories and ads for RA without mentioning, except mildly and in passing, the serious and debilitating pain those of us who cope with this disease live with every day? It's a real conundrum.

Wishing you the best, Terry. Have a great SB Sunday!

Candied Frogs said...

This is a typical scenario isn't it? Anyone who has had an experience with chronic pain would have made that part of the interview most clear.

I was on my back for months some years ago, stuffed with hydromorph Contin and waiting for a back op, and until that time I had no real understanding of chronic pain and how all encompassing it is in one's day-to-day life. It's one of those things you need to experience to really get it.

I'm one of the lucky ones for whom chronic pain is a thing of the past. I no longer face dealing with permanent pain while getting on with all the other things that need to be done in life. It's not about sympathy at all, but a bit of empathy wouldn't hurt.

Too bad about the interview Terry. You're quite right... The important message got dodged.


tharr said...

Wren, I did not try to get back in touch with her because it was my understanding that they were already being printed. The pdf that she sent me was final9.pdf I believe so she had to rewrite it at least 8 times, I don't know how it started out, maybe she had something about the pain in there and was told to take it out. I don't know. When they get back with you, let us know on your blog. Thanks Wren, hope you are doing well these days.

Hey Andy, you are so right. You don't have a real understanding of it until it hits you. I'm so glad you don't have to deal with chronic pain anymore. A lot of things run through your head while in pain ... some good, some bad. Keep on riding!

Lana said...

How about that? You are famous too! You are correct in bringing up the pain issue missing from the article. People need to know that living with RA isn’t easy – it is hard work. Please insist that they bring this issue up.

Leigh said...

What a shame that they would spin the story like that. It's a problem and we've all seen the commercial for the RA meds and the people look happy and function fine and of course they live without pain due to all these wonderful new medications.

I'm sure you feel a bit duped. I'm feeling it a bit for you. I'm so glad you got some publicity, but can't believe they would omit one of the critical symptoms of our disease.


abcsofra said...

Ummmmm....and can we please have a link to this article :-) Yup, I would be upset also. No pain, we have no gain in our ra lives and big boy bike in the pic...that is just a disgrace for sure. Reprint!!!! But I am glad you got to be in print. I so understand that although we may try and try to get the truth out there about ra...sometimes people just don't want to know the truth.

tharr said...

Lana, I'm Not Famous (At Least Not Yet). lol It was my understanding that the article was already being printed by the time I received the approved file of it. You're right though ... living with RA is hard work.

Leigh, welcome and thanks for the comment. The RA commercials crack me up, the down side of them is that the general public doesn't know any differently. They think we just have to take a shot and then we are able to go do whatever we want. I really don't care about the publicity, I just did the interview about overcoming obstacles while living with RA to maybe give someone else the courage to keep on trying to do what they love doing. I hope you will come back soon.

Deb, I just have the file on my desktop. I suppose I could upload it and give you the link to check it out. I think you hit the nail on the head there ... sometimes people just don't want to know the truth.

Mainlyglobal said...

I have suffered through chronic back pain for over 20 years, and know many folks who are working through various forms of arthritis. Over the years I have researched natural methods for pain relief since, on principle, I reject the notion of a dependence on drugs or the prospects of surgery. In the last two years I have developed a natural method for pain relief that has dramatically improved my level of relief, as it has for many others working through a wide range of chronic pain conditions, including a fair number of those working through various forms of arthritis. If you like, feel free to download a white paper that I have prepared that reflects the experiences of many users of my method. You can find this paper at, and I hope this information is helpful.

take care, thom