Well-Come to Agent for Change, a blog created by Marly Silverman, to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide. Through this blog I want to share ideas, exchange, communicate and find solutions for everyday living. The goal is to pursue quality of life that will make a difference in the lives of individuals with neuroendocrineimmune disorders (NEIDs).

Tuesday, June 12, 2012

You Are Not Alone

(from Tina Tidmore, guest blogger)

As I sit in a hotel room, listening to 12 other people discuss their experiences with ME/CFS, I can't help but think of the other group of patients in cyberspace. The young people here share their stories of dealing with school, ignorant physicians and the joys of finally finding someone who can help. "That's just like what happened to me," is a phrase that shows a connection and an understanding that patients experience only with other patients.

Hearing a 16-year-old talk about ATP and coxsackie virus shows that ME/CFS is really its own world, with its own language and its own citizens and celebrities. Stories of different doctors and their treatments actually shows we are really like a family. Dr. Dennis Mangan, formerly of the NIH, said the ME/CFS researchers and patients together are like a family, maybe a dysfunctional one, but still a family.

Here in this room, we have no dysfunction. We have laughter, understanding, patience (and patients) and a camaraderie. Not only do we have the patients sharing with each other, we have parents who share their own trials and victories. One mother tells her story and breaks down in tears. Quickly, another mother comes to hug her. Ten minutes later, loud laughter fills the room. And we even have a little bit of strategy talk. It's like a large group of people who just discovered others of their kind.

What is most interesting to me is that these names who are attending are not the same names I see in the ME/CFS cyberworld. I asked some, why don't I see you on the message boards, Facebook, talking to other ME/CFS patients online. One young man said he has seen some improvements in his health. He still wants to help the cause, but for his own emotional, and therefore his physical health, he had to disconnect himself from the day to day drain. The ME/CFS cyberworld can be very demanding, even caustic.

I certainly understand that. After many battle scars, I left from doing government, crime and corruption coverage for the local newspaper. I told the publisher I was not ready for pasture, but I emotionally and physically could not be on the front lines any more. Evidently, the same thing can happen with ME/CFS advocates. We must protect our health first. And we should appreciate anything anyone does because we know it comes with a prices.

I also hear some of the young people who say that while they want to advocate for other young ME/CFS patients, they need to fill their time between the CFSAC meetings actually thinking about and doing (as they can) things that are not disease-centric. These young people want a life of school, friends, and more. So, as they can, if they can, their precious little energy is spent on living.

I posed the question of why there is such a difference in the ME/CFS cyberworld, with people daily looking for and commenting on the littlest nugget of news on the disease. The consensus is that some of  our disease brothers and sisters have lost much of their life. Their friends and jobs and more have all disappeared. All they have is their computer screen, their window into the rest of the world, a world they can not participate in, only comment on. Frustrated, they want it to change. But without the creativity that some have found to do something constructive online, it only leads to anger. Thankfully, it seems to be less than it was a year or two ago. But that anger is still there.

My lesson from tonight's gathering in this hotel suite, and from what we see in the ME/CFS cyberworld, is that we must protect our emotional and physical health. If that means we are part-time advocates, then so be it.

Tonight, all of us - those in the ME/CFS cyberworld and all those who fight the battle at the CFSAC - can go to bed and rest with the peaceful knowledge that we are not alone.


Unknown said...

Very nice Tina. Thank you.

Unknown said...

Nice job Tina. Thanks!

Sue Jackson said...

Hi, Tina -

I have just returned from a 3-week vacation and am trying to catch up on all that I missed, including CFSAC, as well as almost 1000 e-mails!

I just loved your post here - it sounds as if you met some of my friends - teens and parents. I have experienced exactly what you describe here with our local group of families and even in the virtual world with our Facebook Parents Group. That feeling of connection is powerful and wonderful.

Thanks for taking the time and energy to share your thoughts - I wish I could have been there this year!


Live with CFS