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Beating M.E.: Joey Tuan's Illness Becomes Engine For Change

By Jody Smith HERWriter
 
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Beating M.E.: Joey Tuan's Illness Becomes Engine For Change 0 5
Joey Tuan's Illness Becomes Engine For Change to Beat M.E.
Photo Courtesy of Joey Tuan

Joey Tuan was an adrenaline junkie, working 60 hours a week as a consultant in San Fransisco. He went to the gym four times a week, and studied for the Chartered Financial Analyst exam in the evenings.

He was in a committed relationship, and jumped at any opportunity to go to new bars and restaurants with his friends.

All that changed when he was 23, the day he became ill with myalgic encephalomyelitis, or M.E. (formerly known as chronic fatigue syndrome).

He was in the third mile of a 17-mile hike at Half Dome in Yosemite National Park in California, and found himself feeling "like death warmed over". When he got home he had a "high fever from hell" and was incapacitated in bed for two weeks.

When he went to the ER, he was diagnosed with mononucleosis. Weeks went by and he was still bedridden. He had to move back in with his parents in Los Angeles, bedridden and needing help with everything, including eating, for the following six months.

It took 10 months to be diagnosed with M.E. He'd never heard of this condition, learning about it on an online forum. He was fortunate to find mention of a good doctor in his area.

Tuan was incapacitated for six years, spending more than $200,000 on treatments. In a typical day, he would sleep anywhere from six to twelve hours at a stretch, but never woke feeling rested. His mother took care of his meals because he was unable to stand up to cook.

He was able to spend half an hour on the computer researching for his condition, then his head was throbbing too much and he'd have to stop. The rest of his time was spent meditating, driving around, and watching TV which he never used to do.

He had a bath at night since he couldn't stand up in the shower. He'd take benzodiazapines to put him to sleep, ending a day where "I was basically living but not alive."

His social life and his efforts researching his illness, were online in patients' forums. Though he learned a lot about other peoples' symptoms, he didn't know if he was dealing with the same things or whether their treatments would work for him.

Add a Comment8 Comments

EmpowHER Guest
Anonymous

Hi Jody,

Thank you for this article. Joey (and you) are amazing people.

I just wanted to mention that the link to the FAQ's on Healclick doesn't work. I think it's missing the first part of the URL?

Rich

January 15, 2014 - 2:29pm
Jody Smith HERWriter (reply to Anonymous)

Hi Rich

I appreciate the encouragement. 

Thanks for pointing out the dead link. Should be working now.

Jody

January 15, 2014 - 7:21pm
EmpowHER Guest
Anonymous

Thanks Jody for writing about my story and throwing in a mention of HealClick :) This is the one I really want to share with family and friends to show them what life as a patient w/invisible illness is like.

And thanks for everyone else for your support.

January 15, 2014 - 10:27am
Jody Smith HERWriter (reply to Anonymous)

Glad to do it Joey. You've been sick for so long, the fact that you are recovering is great -- and an encouragement for others who are still really sick and are afraid to hope for a better life. People need to hear about such positive things. And people need to be reminded that there are people who are so incapacitated as you and I have both been in the past. Trying to make an invisible illness a little less invisible.

HealClick could turn out to be really beneficial for the M.E. community, I'm glad to be able to get some information out there. That you and your team have been able to put this together while dealing with the challenges of your own bad health is remarkable and noteworthy. 

I know that your main goal is the care and nurture of fellow patients. You have been there and know just how bad it can be -- and that's pretty darned bad. That suffering creates the heart of a champion in someone who is open and willing. In this case, that would be you.:)

Jody

January 15, 2014 - 1:20pm
EmpowHER Guest
Anonymous

Thanks for the update from a fellow sufferer of ME from uk
Good luck in all you do to beat this debilitating illness
Gary

January 15, 2014 - 8:32am
Jody Smith HERWriter (reply to Anonymous)

Good luck to you, Gary. I hope you are able to recover from M.E.

Thanks for writing.

Jody

January 15, 2014 - 10:09am
EmpowHER Guest
Anonymous

Thanks, Jody! I've been mostly off the forums you mention here. Did not know about HealClick. I'm so glad Joey found a way to put meaning in his life. And I'm grateful for all your articles!

Kelly Connor

January 14, 2014 - 11:11am
Jody Smith HERWriter (reply to Anonymous)

Hi Kelly

Always happy to bring people up to speed on things, keep you in the know. :)

Thanks for the encouragement.

Jody

January 14, 2014 - 11:15am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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