If you're living with a chronic illness, you're in the right place.

Tuesday, November 6, 2012

NHBPM #6: Advice To the Newly Diagnosed

12:36 PM Posted by Tiffany Taft , ,
Today's topic is advice for those newly diagnosed with a chronic illness.  Gee, I wonder where I'm going to go with this one...

Ok, so you have ___________________.  It's not going to go away, you're probably going to have to take daily medication for the rest of your life - even when you're feeling well, people probably won't get it, your social/family/work roles may change, and you may never really be able to predict what your symptoms may look like on a given day.  Congratulations!  You're in the chronic illness club.  Here's a brochure on your condition.

So, what is my advice to you?

Be Informed.
Learn about your condition and its treatments.  Don't be afraid to ask your doctor questions.  Write them down before your appointment so you don't forget.  You are your best advocate and solid healthcare involves a team approach where you and your doctor make decisions in a collaborative way.  
Pubmed is a great reference for abstracts to medical research, and even some free full-text articles should you desire.

Beware of Dr. Google.
The internet is a revolutionary tool, chalk full of information about every medical problem under the sun.  Some good, some bad.  Be aware of anxiety from self-diagnosing based on a collection of symptoms that could be due to a multitude of conditions. 

If It Sounds Too Good to be True, It Probably Is.
"Eating only lima beans cured my cancer!"  This is not to say you shouldn't try alternative treatments that are backed up by some science or research.  But be wary of those promising a cure for incurable conditions.

Connect with Others. 
Many people socially withdraw when they live with a chronic illness.  I've met with people who have completely shut down their social lives for fear of having symptoms in public or underestimating their ability to handle emergency situations or the reactions of others.  Connecting with others who share your diagnosis can fill in some of the void that may occur as relationships change post-diagnosis.  
But also be aware that you're going to hear a wide variety of stories, and some of the sicker or more distressed people may spend more time online.  Find a good balance between online and offline support.

Pay As Much Attention to Your Mental Health. 
I want to put this one up in cheesy 1990s-era HTML lights, because it's so important. When we're diagnosed with a chronic illness, the focus is on fixing the physical body.  Western medicine is (finally) moving away from "Dualism," or the idea that the mind and body are separate entities, and toward a more comprehensive bio-psycho-social-spiritual model.  Pay attention to how you're doing mentally.  Feelings of sadness, worry, anger, frustration, and even helplessness are common and normal.  Keep tabs on your emotions by keeping a mood journal.  If you notice that negative is becoming the norm and you're having a hard time overcoming it on your own, there are people out there to help.