Skip to main content

NHBPM #6: Advice To the Newly Diagnosed

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.

Popular posts from this blog

So You Have IBD During a Pandemic

Hey! What's going on? Been pretty boring over here in Chicago. Ok I don't need to elaborate on what the hell is going on in the world. We are being bombarded with information - some accurate, a lot inaccurate - about this pandemic. It's very easy to become completely overwhelmed by it all. We've been forced, pretty damn quickly, to completely overhaul our way of life for the greater good. To reduce the strain on our healthcare system of the sick and dying. And us humans are generally bad with rapid, monumental change that we really don't have a lot of say in. Our little reptilian brains do what they're supposed to do (prime us for fight or flight or freeze) but our advanced "thinking" parts of our brain have to interject with all sorts of unhelpful thoughts, thereby sending some of us off the rails. Before we start, turn off the news. Seriously. In the days following 9-11 we found people who consumed more 24-hour news channel information were mor

Psychosocial aspects of having an ostomy

This past Saturday, Tiffany and I had the honor of speaking at the United Ostomy Associations of America's Regional Midwest conference. I was assigned the task of speaking to the patients, and Tiffany addressed the partners or caregivers. I wanted to share with you some of the highlights from my talk. I only had an hour for my session, and with about 100 people in the room, it was not nearly enough time. I love bullet points, so here you go: We are all different! Every ostomate is different and not one size fits all for the emotional/mental aspect either. Who had months to talk about an ostomy and weigh pros/cons? Who was this a more sudden decision for? Who had cancer? Who had IBD? Something else? Who had an ileostomy? colostomy? urostomy? Who has a temporary? Permanent? Multiple temporaries? What age where you when you got your ostomy? Under 20, 20s, 30s, 40s, 50s, 60+ Who was single when they got their ostomy? With a serious partner when they had it? Some find a stom

IBD & Medical Trauma

Medical trauma is such an under-recognized issue for the chronnically ill. It's a hard topic to talk about because it can seem like we are pointing fingers at healthcare workers. Maybe that's why there are only, now, 4 studies on the topic in patients with inflammatory bowel disease (IBD). If you are someone who treats people with IBD please know I am not here to demonize or criticize. I am both a patient and a GI psychologist. I know the medical system from both sides. I know how messed up and broken it is. But ignoring this or rationalizing it away as only affecting a few folks is wrong. So let's talk about it. Post-traumatic stress (PTS) is the term we use for medical trauma due to technicalities in the Diagnostic and Statistical Manual for Mental Disorders (DSM-5) for post-traumatic stress disorder (PTSD). PTS can be less severe that full on PTSD, or it can be full on PTSD. Regardless, the symptoms are identical: Feeling hypervigilant/on-edge (increased